Individual Rights in Health Care and Public Health PDF

© Mary Terriberry/Shutterstock CHAPTER 6 Individual Rights in Health Care and Public Health LEARNING OBJECTIVES By the end of this chapter you will be able to: Describe the meaning and importance of the “no-duty to treat” principle Explain generally how the U.S....

© Mary Terriberry/Shutt CHAPTER 6 Individual Rights in Health Care and Public Health LEARNING OBJECTIVES By the end of this chapter you will be able to: Describe the meaning and importance Explain generally how the U.S. Describe the types and limitations Describe the balancing approach ▸▸ Introduction T he real-life scenarios in BOX 6-1 touch upon the key issues you will confront in this chapter: namely, the ways in which the law creates, pro- tects, and restricts individual rights in the contexts of health care and public health. Individuals are deeply impacted by law on a daily basis, and this fact is no less true when they navigate the healthcare system, or when an individual’s actions are measured against the broader interests of the public’s health. Over many decades, legal principles have been rejected, developed, and refined as the law continually struggles to define the appro- priate relationship between individuals and the physi- cians, hospitals, managed care companies, and others they encounter in the healthcare delivery system, and between individuals and government agencies charged with protecting public health and welfare. These balanc- ing acts are made all the more difficult as the legal sys- tem bumps up against the quick pace of technological 114 Chapter 6 Individual Rights in Health BOX 6-1 Vignette At the turn of the 20th century, an Indiana physician named George Eddingfield repeatedly refused to come to the aid of Charlotte Burk, who was even though he was Mrs. Burk’s family physician. Doctor Eddingfield conceded at trial that decision for no particular reason and despite the facts that he had been offered monetary compensation in advance of his performing any medical services and that he was aware that no other physician was available to provide care to Mrs. Burk. Unattended by any medical providers, Mrs. Burk eventually fell gravely ill, and both she and her unborn child died. It was determined upon trial and subsequent appeals that Dr. Eddingfield did not wrongfully cause either death. Around the same time as the scenario just described, the Cambridge, Massachusetts, Board of Health everyone within city limits to be vaccinated smallpox disease under a state law granting of health the power, under certain circumstances, to require the vaccination of individuals. After refusing to abide by the Cambridge Board’s order, Henning Jacobson was convicted by a state trial court and sentenced to pay a $5 fine. Remarkably, Mr. Jacobson’s case not only made its way to the U.S. Supreme Court, it resulted in one of the court’s most important public health rulings and a sweeping statement about limitations to fundamental individual rights in the face of threats to the public’s health. is dominated by the role and scope of government “police powers,” which permit governments, when acting to promote or protect public health, individual freedoms and liberties. ▸▸ Background Lurking behind any discussion of individual rights in a health context is one of the most basic principles in U.S. health law: generally speaking, individuals have no legal right to healthcare services (or to public health insur- ance), and, correspondingly, there exists on the part of healthcare providers no general legal duty to provide care. This is referred to as the “no-duty” or “no-duty-to- treat” principle, which is aptly described by the Indiana Supreme Court in the well-known 1901 case of Hurley v. Eddingfield, the facts of which were referred to in the first vignette in Box 6-1. In its decision, the court wrote that the state law permitting the granting of a medical license provides for... standards of qualification... and penalties for practicing without a license. The [state licensing] act is preventive, not a laws that narrow the scope of the no-duty principle. For example, a federal law called the Examination and Treatment for Emergency Medical Conditions and Women in Labor Act enables all individuals to access some hospital care in medical emergencies, irrespec- tive of the individual’s ability to pay for that care or a hospital’s willingness to treat the individual. Also, both federal and state laws that generally prohibit cer- tain forms of discrimination (say, based on race or dis- ability) apply in the context of health care and might thus result in access to health services that otherwise would not be forthcoming. Furthermore, some public health insurance programs—Medicaid and Medicare, most prominently—create entitlements (a legal con- cept denoting a legal claim to something) to services for individuals who meet the programs’ eligibility cri- teria (Jost, 2003), and some health insurance products obligate physicians participating in the plan’s networks to extend care to plan members. Finally, some states implemented universal healthcare coverage programs, such as Maine’s Dirigo Health Reform Act, which was designed to provide access to health coverage person in Maine (and which ended at the end of 2014 as residents of the state were transitioned into the health insurance exchanges created by the ACA). When thinking about the law’s no-duty principle, you must also take into account the role of medical ethics, which might require more of a healthcare pro- fessional than does the law. For example, no law man- dates that licensed physicians aid a stranger in medical distress, but many believe an ethical obligation exists in this instance. And although legally the no-duty princi- ple would dictate otherwise, many healthcare provid- ers consider themselves ethically obligated to furnish at least some level of care to those who cannot pay for it. In short, although there is no universal legal right to health care in the United States, certain situations give rise to healthcare rights, and specific populations may be entitled to health care or receive it purely through the magnanimity of ethics-conscious providers. Perhaps because of the federal and state laws that chip away at the no-duty-to-treat principle, many students new to the study of health law erroneously assume that the principle is a legal anomaly, borne solely of the incredible historical power and auton- omy of the medical profession and without mod- ern precedent. In this case, it is instructive to place the principle in a broader “welfare rights” context. During the 1960s, public-interest lawyers, social reform activists, and others pressed for an interpreta- tion of the federal Constitution that would have cre- ated an individual right to welfare. Under this view, the government must provide individuals with min- imally adequate levels of education, food, housing, 116 Chapter 6 Individual Rights in Health poverty and its lack of opportunity, and attain pride, participation in this country’s economic and political life, and financial and emotional success. (Smith, 1997, p. 825) However, efforts around ensuring adequate edu- cation have not been emulated in other social policy areas, such as health care. In fact, health care is treated not as a right, but as a commodity (like televisions or vacuum cleaners) subject to private market forces and socioeconomic status. During the public debate in 1993 over President Bill Clinton’s failed attempt at national health reform, U.S. Representative Dick Armey (R-TX) stated that “health care is just a com- modity, just like bread, and just like housing and every- thing else” (Reinhardt, 1996, p. 102). But why should this be the case, particularly when the private health insurance market has presumably found equilibrium at a point that continually leaves tens of millions of Americans uninsured, and particularly because health care (like education) is different from vacuum clean- ers and other everyday goods in that it has “a funda- mental bearing on the range of one’s opportunities to realize one’s life plans”? (Stacy, 1993, p. 80). There is no single answer to the question of why health care is generally treated in this country as some- thing less than an individual legal right. Many factors beyond the scope of this chapter are implicated: the nature and interpretation of the federal Constitution, politics, a weak labor movement, powerful interest groups, the nation’s free market philosophies, the pub- lic’s often negative view of the government, and more (Blum et al., 2003; Rich, 2000; Vladeck, 2003). In this chapter, we limit the discussion to describing the kinds of health rights that do exist, and how they operate in the context of the healthcare delivery system and when considered against government-initiated public health efforts. Before we explore in depth the scope of indi- vidual health-related rights under U.S. law, however, we briefly describe these same types of rights under international law and under the law of other countries. Through this examination, we provide a backdrop for understanding this country’s approach to legal rights in the context of health. ▸▸ Individual Rights and Health Care: A Global Perspective Despite being the world leader in terms of the devel- opment of medical technologies and the quantity of medical services, the United States is one of the only high-income nations that does not guarantee health BOX 6-2 Discussion Question Depending on one’s personal experience in obtaining health care, or one’s view of the role of physicians in society, of law as a tool for social change, of medical ethics, or of the United States’ broader global community, the no-duty principle might seem appropriate, irresponsible, or downright wrong. Imagine you are traveling in a country where socialized medicine is the legal norm, and your discussion with a citizen of that country turns to the topic of your countries’ respective health systems. When asked, how will you account for the fact that health care is far from being a fundamental right rooted in American law? health of the population”; the Constitution of South Africa imposes on government the obligation to pro- vide access to health services; and under Polish con- stitutional law, citizens are guaranteed “the right to health protection” and access to publicly financed healthcare services (Littell, 2002). Of course, including language respecting health rights in a legal document—even one as profound as a national constitution—does not guarantee that the right will be recognized or enforced. As in the United States, multiple factors might lead a foreign court or other tribunal to construe rights-creating language narrowly or to refuse to force implementation of what is properly considered a right. Examples of these fac- tors include the relative strength of a country’s judicial branch vis-a-vis other branches in its national gover- nance structure and a foreign court’s view try’s ability to provide services and benefits inherent in the health right. ▸▸ Individual Rights and the Healthcare System The “global perspective” you just read was brief for two reasons. First, a full treatment of international and foreign health rights is well beyond the scope of this chapter, and second, historically speaking, international law has played a limited role in influ- encing this nation’s domestic legal principles. As one author commented, “historically the United States has been uniquely averse to accepting international human rights standards and conforming national laws to meet them” (Yamin, 2005, p. 1156). This fact is no less true in the area of health rights than in any 118 Chapter 6 Individual Rights in Health Rights Under Healthcare and Health Financing Laws We begin this discussion of rights-creating health laws with the Examination and Treatment for Emergency Medical Conditions and Women in Labor Act (also referred to as EMTALA, which is the acronym for the law’s original name—the Emergency Medical Treat- ment and Active Labor Act—or, for reasons soon to become clear, the “patient anti-dumping statute”). We then briefly discuss the federal Medicaid program in a rights-creating context and wrap up this section with a brief discussion of the ACA. Rights Under Healthcare Laws: EMTALA Because EMTALA represents the only truly universal legal right to health care in this country—the right to access emergency hospital services—it is often described as one of the building blocks of health rights. EMTALA was enacted by Congress in 1986 to prevent the practice of “patient dumping”—that is, the turning away of poor or uninsured persons in need of hospital care. Patient dumping was a common strategy among private hospitals aiming to shield themselves from the potentially uncompensated costs associated with treating poor and/or uninsured patients. By refusing to treat these individuals and instead “dump- ing” them on public hospitals, private institutions were effectively limiting their patients to those whose treatment costs would likely be covered out-of-pocket or by insurers. Note that the no-duty principle made this type of strategy possible. EMTALA was a conscious effort on the part of elected federal officials to chip away at the no-duty principle: by creating legally enforceable rights to emergency hospital care for all individuals regardless of their income or health insurance status, Congress created a corresponding legal duty of care on of hospitals. At its core, EMTALA includes two related duties, which technically attach only to hospitals participate in the Medicare program (but then again, nearly every hospital in the country participates). The first duty requires covered hospitals to provide an “appropriate” screening examination to all individu- als who present at a hospital’s emergency department seeking care for an “emergency medical condition.” Under the law, an appropriate medical screening is one that is nondiscriminatory and that adheres to a hospi- tal’s established emergency care guidelines. EMTALA defines an emergency medical condition as a medical condition manifesting itself by acute symptoms of sufficient severity (including healthcare rights, we mention it also in this context.) Although most certainly a law concerning health- care financing, Medicaid is unlike most other health financing laws in that it confers the right to individ- ually enforce program obligations through the courts (Rosenblatt, Law, & Rosenbaum, 1997, pp. 419–424). This right of individual enforcement is one of the rea- sons why Medicaid, 50 years after its creation, remains a hotly debated public program. This is because the legal entitlements to benefits under Medicaid are viewed as a key contributor to the program’s high cost. Yet whether Medicaid’s legal entitlements are any more of a factor in the program’s overall costs than, say, the generally high cost of health care, is not clearly established. Rights Under Health Insurance Laws: The ACA As you will learn in subsequent chapters, the ACA is far more than a law that concerns only health insurance; it is a sweeping set of reforms that touch on quality, public health practice, health disparities, munity health centers, healthcare fraud and abuse, comparative effectiveness research, the health work- force, health information technology, long-term care, and more. However, for purposes of this chapter, we mention it briefly in terms of its impact on the rights of individuals to access health insurance and to equi- table treatment by their insurer. Details concerning the ACA’s effect on the public and private insurance markets are discussed elsewhere. Through a series of major reforms to existing pol- icies, the ACA reshapes the private health insurance market, transforming private health insurance from a commodity that regularly classified (and rejected) individuals based on their health status, age, disabil- ity status, and more into a social good whose avail- ability is essential to individual and population health (Rosenbaum, 2011). The key elements of this shift include a ban on exclusion and discrimination based on health status or preexisting health conditions; new protections that ensure that, once covered by insur- ance, individuals will have access to necessary care without regard to artificial annual or lifetime expen- diture caps; a guarantee that once insurance coverage is in place, it cannot be rescinded except in cases of applicant fraud; a ban on additional fees for out-of- network emergency services; the provision of finan- cial subsidies to help low- and moderate-income individuals and small businesses purchase insurance coverage; the inclusion, in the individual and small group insurance markets, of a package of “essential 120 Chapter 6 Individual Rights in Health physicians who performed horrendous experiments on prisoners in Nazi concentration camps during the Second World War. The code spells out principles of research ethics, including the need to secure in advance the voluntary consent of the research subject. These principles have been codified and expanded in American federal statutory and regulatory law con- cerning federally funded biomedical research (Protec- tion of Human Subjects, 2009). But if the Nuremberg Code can be thought of as the roots of U.S. informed consent law, then the decision in Canterbury v. Spence (1972) can be thought of as the trunk. In 1959, Jerry Canterbury was a 19-year-old suffering from severe back pain. His neurosurgeon, Dr. William Spence, informed him that he would need a laminectomy—a surgical procedure in which the roofs of spinal vertebrae are removed or trimmed to relieve pressure on the spinal cord—to correct what the doctor believed was a herniated disc. However, Dr. Spence did not inform Canterbury of any risks associated with the surgery. The day after the opera- tion, while appearing to recuperate normally, Canter- bury fell from his hospital bed while no attendant was on hand and a few hours later began suffering paral- ysis from the waist down. This led to a second spinal surgery, but Canterbury never fully recovered; years later, he needed crutches to walk and he suffered from paralysis of the bowels. Canterbury sued Dr. Spence, alleging negligence in both the performance of the laminectomy and the doctor’s failure to disclose risks inherent in the oper- ation. The federal trial judge ruled in Dr. Spence’s favor and Canterbury appealed, setting the stage for the now-famous decision in 1972 by the federal Court of Appeals for the District of Columbia Circuit (con- sidered second in national importance to the Supreme Court).c The decision includes two important determi- nations pertinent to this chapter. The first is that “as a part of the physician’s overall obligation to the patient, [there exists a] duty of reasonable disclosure of the choices with respect to proposed therapy and the dan- gers inherently and potentially involved.” The court viewed this duty as a logical and modest extension of a physician’s existing general duty to Importantly, the court discarded the notion that “the patient should ask for information before the physi- cian is required to disclose.” In other words, the duty to disclose requires more than just answering patient questions; it demands voluntary disclosure on the part of the physician of pertinent medical information. The Canterbury court’s second key determination concerns the actual scope of the disclosure required— in other words, once the physician’s duty to disclose is BOX 6-3 Discussion Questions Go back to the first legal principle drawn from the Canterbury decision: namely, that physicians have a duty of reasonable disclosure to include therapy options and the dangers potentially involved with each. Do you agree with the court that this duty is both a logical and modest extension of physicians’ “traditional” obligation to their patients? Why or why not? Depending on your answer, are you surprised to learn that some states have opted not to follow the Canterbury court’s patient-oriented standard of informed consent, relying instead on the more conventional approach of measuring the legality of physician disclosure based on what a reasonable physician would have disclosed? “informational privacy,” meaning the limiting of oth- ers’ access to and use of an individual’s private infor- mation.e The second approach—the focus of this section—is concerned with individual autonomy and freedom from governmental interference in making basic personal decisions. This right is one of the most debated in law, both because of its implicit nature (constitutionally speaking) and because it has served as the legal underpinning of several divisive social issues, including abortion, intimate associations, and the decisions as to whether, when, and how to end one’s life. The right to privacy achieved prominence begin- ning with the Supreme Court’s landmark 1965 deci- sion in Griswold v. Connecticut (1965), in which the court considered the constitutionality of a state law criminalizing the provision of contraception to mar- ried couples. In the early 1960s, Estelle Griswold, the Executive Director of the Planned Parenthood League of Connecticut, and one of her colleagues were convicted of aiding and abetting “the use of a drug, medicinal article, or instrument for the purpose of preventing conception” by providing contraceptives to a married couple in violation of Connecticut law. The court determined that although the Constitution does not explicitly protect a general right to privacy, certain provisions in the Bill of Rights create “penumbras,” or zones, of guaranteed privacy, and that Connecticut’s law constituted an undue intrusion into one of these zones (i.e., marriage). After the Griswold decision, advocates of the con- stitutional right to privacy flooded the federal courts with cases designed to expand the scope of the right. Quickly, laws banning interracial marriage were struck down (Loving v. Virginia, 1967), as were laws 122 Chapter 6 Individual Rights in Health interests in safeguarding health, in maintaining medi- cal standards, and in protecting potential life. At some point in pregnancy, these respective interests become sufficiently compelling to sustain regulation of the fac- tors that govern the abortion decision” (Roe v. Wade, 1973). The court then linked both a woman’s “right to choose” and states’ interest in protecting potential life to the viability of the fetus, setting forth the following “trimester framework” that enhances state power to regulate the abortion decision and restricts a pregnant woman’s right as the fetus grows older: a. For the stage prior to approximately the end of the first trimester, the abortion deci- sion and its effectuation must be left to the medical judgment of the pregnant woman’s attending physician. b. For the stage subsequent to approximately the end of the first trimester, the State, in promoting its interest in the health of the mother, may, if it chooses, regulate the abortion procedure in ways that are reason- ably related to maternal health. c. For the stage subsequent to viability, the State, in promoting its interest in the poten- tiality of human life may, if it chooses, reg- ulate, and even proscribe, abortion except where it is necessary, in appropriate medical judgment, for the preservation of the life or health of the mother (Roe v. Wade, 1973). As a matter of both policy and law, the Roe deci- sion has been vigorously criticized (Barzelay & Hey- mann, 1973; Bopp & Coleson, 1989; Ely, 1979; Regan, 1979). For example, detractors claim that the court improperly made social policy by “finding” an expan- sive constitutional right to privacy (one broad enough to include the right to terminate a pregnancy) where one did not expressly exist. As a legal matter, many have argued that the decision relied too heavily on medical concepts that would be rendered obsolete as medical technology advanced and that would, in turn, result in a narrowing of the constitutional right advanced in the decision.g Regardless of these and other criticisms, the Roe decision was monumental beyond its legal implica- tions. It galvanized political forces opposed to abortion and prompted a movement to create ways to discour- age the practice through state policies designed to regulate the factors involved in the abortion decision. For example, as described next, Pennsylvania enacted a law that imposed a series of requirements on women seeking abortion services, and it was this law that nearly 20 years after Roe set the stage for another abortion or the imposition of a substantial obstacle to the woman’s effective right to elect the procedure. Second is a confirmation of the State’s power to restrict abortions after fetal viability, if the law contains exceptions for pregnancies which endanger the woman’s life or health. And third is the principle that the State has legitimate interests from the outset of the pregnancy in protecting the health of the woman and the life of the fetus that may become a child. These principles do not con- tradict one another; and we adhere to each. (Planned Parenthood of Southeastern Pennsyl- vania v. Casey, 1992) Notice how, in interpreting Roe, the court in Casey makes some remarkable alterations to the contours of the right to choose to have an abortion. First, trimesters were replaced by fetal viability as the regulatory touch- stone. Second, the pregnant woman, not her attending physician, makes the abortion decision. Third, a state’s interest in protecting pregnant women and fetuses now attaches “from the outset of the pregnancy,” not at the beginning of the second trimester. Fourth, and perhaps most important, the court’s invalidation of the trimester framework enabled the establishment of a new “undue burden” standard for assessing the con- stitutionality of state abortion regulations. Under this new standard, a state may not prohibit abortion prior to fetal viability, but it may promulgate abortion regu- lations as long as they do not pose a “substantial obsta- cle” to a woman seeking to terminate a pregnancy. The court did not, however, alter its decision in Roe that, post-viability, a state may proscribe abortion except when pregnancies endanger a woman’s life or health. Taken together, these alterations both maintain a pregnant woman’s basic constitutional right to obtain an abortion pre-viability and enhance state interest in protecting the potentiality for human life. Once the court established the undue burden standard for assessing the constitutionality of state abortion regulations, it applied the standard to each constitutionally questionable amendment to Penn- sylvania’s Abortion Control Act. In the end, only the spousal notification provision was struck down as an unconstitutional burden; the court determined that some pregnant women may have sound reasons for not wishing to inform their husbands of their decision to obtain an abortion, including fear of abuse, threats of future violence, and withdrawal of financial support. As a result, the court equated the spousal notification requirement to a substantial obstacle because it was likely to prevent women from obtaining abortions. 124 Chapter 6 Individual Rights in Health and dilation and extraction (D&X)—and that the Nebraska law’s vague definition of “partial birth” abor- tion effectively banned both procedures. Again by a 5–4 majority, the Supreme Court struck down the Nebraska law as unconstitutional on two separate grounds. First, the court concluded that the statute created an undue burden on women seeking pre-viability abortions. The court reasoned ning the most commonly used method for pre-viability second trimester abortions—the D&E procedure— unconstitutionally burdened a woman’s ability to choose to have an abortion. Second, the court invali- dated the state law because it lacked an exception for the preservation of the health of the pregnant woman. The court rejected Nebraska’s claim that the banned procedures were never necessary to maintain the health of the pregnant woman and held that “significant med- ical authority” indicated that the D&X procedure is in some cases the safest abortion procedure available. At the time Stenberg was decided, nearly 30 states had laws restricting D&E- and D&X-type abortions in some manner. Attempts to enact bans on these abor- tion procedures, however, have not been made only by state legislatures. Congress has tried numerous times to promulgate a federal ban, and after Stenberg was handed down, congressional opponents to abortion vowed to craft a ban that would pass constitutional muster. This effort culminated in the Partial Birth Abortion Ban Act of 2003 (PBABA). Partial Birth Abortion Ban Act of 2003. PBABA represented Congress’s third attempt since 1996 to ban “partial birth” abortions. Previous bills were vetoed by President Bill Clinton in 1996 and 1997, but in late 2003, PBABA easily passed both houses of Congress and was signed into law by President George W. Bush. Immediately, the constitutionality of PBABA was challenged in federal court, and the Supreme Court ultimately decided the law’s fate in 2007, as described here. PBABA establishes criminal penalties for “any physician who... knowingly performs a partial birth abortion and thereby kills a human fetus.” Attempt- ing to avoid the definitional vagueness that affected the Nebraska law’s constitutionality, the drafters of the federal law used more precise language in an effort to ban only D&X procedures, although PBABA does not specifically refer to any medical procedure by name. Instead, the law defines a “partial birth” abortion as an abortion in which the person performing the abortion deliberately and intentionally vaginally delivers a living fetus until, in the case of a headfirst presentation, the entire performing the intact D&E for the purpose of destroy- ing the fetus. The court also found that PBABA did not impose an undue burden for being overly broad. To distinguish it from the Nebraska law in Stenberg, the court majority stated that PBABA targets extraction of the entire fetus, as opposed to the removal of fetal pieces beyond a specific anatomic point in the preg- nant woman. The court then held that PBABA did not pose a “substantial obstacle” to obtaining an abortion under Casey’s undue burden test. According to the court, the ban on partial birth abortions furthers the govern- ment’s interest in protecting fetal life and the govern- ment has the ability to prohibit practices ending fetal life that are similar to condemned practices. Finally, in a major shift that received relatively little attention by the court majority, the court ruled that the fact that PBABA did not contain language protecting the health of the woman did not render the law uncon- stitutional. Deferring to Congress because there are other safe procedures besides intact D&E that a doctor may use to perform an abortion and because accord- ing to the court PBABA promotes fetal life, the court simply declared the law constitutional notwithstand- ing the missing language. The Right to Be Free From Wrongful Discrimination We now transition to the final topic in the discussion of individual legal rights to and within health care— namely, the topic of healthcare discrimination.h Like discrimination generally, healthcare discrimination has a lurid and lengthy history in this country. Prior to the Brown v. Board of Education decision in 1954 and the civil rights movement of the 1960s, health- care injustice and exclusion based on race and other factors were commonplace, dating to slavery times and plantation-based racially segregated health care. After the end of the First Reconstruction, states passed so-called Jim Crow laws, cementing in place legally segregated health care. As a result, hospitals, physician practices, medical/nursing/dental schools, and pro- fessional medical societies were all separated based on race. In places where Jim Crow laws had not been passed, corporate bylaws and contracts between pri- vate parties often had the same discriminatory effect, and these “Jim Crow substitutes” were generally hon- ored and enforced by the courts that interpreted them. Federal law also played a role in perpetuating racially segregated health care. For example, the Hos- pital Survey and Construction Act of 1946 (more commonly known as the Hill–Burton Act, after the 126 Chapter 6 Individual Rights in Health BOX 6-4 Discussion Question If you were asked to distill, down to their most essential parts, the constitutional right to privacy and the right to privacy as it applies to abortion, elements would you include? Race/Ethnicity Discrimination The fact that healthcare discrimination premised on race or ethnicity has dominated the healthcare civil rights landscape should not be surprising, because racist beliefs and customs have infected health care no less so than other areas of life, such as education, employment, and housing. This fact is chronicled to a staggering degree by W. Michael Byrd and Linda A. Clayton, two physician-researchers at the Har- vard School of Public Health (2000; 2002). Byrd and Clayton paint a complex and disturbing picture of a healthcare system that itself perpetuates racism in health care in three distinct ways: by not destroying the myth that minority Americans should be expected to experience poorer health relative to Caucasians; by organizing itself as a private, for-profit system that marginalizes the indigent and minorities; and by refusing to acknowledge the historical and ongoing problem of racial exclusion in health care. One key problem that in part results from the design of the healthcare system is that of racial and ethnic health disparities—differences in healthcare access, treatment, and outcomes between popula- tions of color and Caucasians. In 2003, the Institute of Medicine (IOM; now called the Academy of Med- icine) released an influential report that included overwhelming evidence of racial and ethnic health disparities and documented that these disparities could not be explained solely by the relative amount of health care needed by populations of color and nonminority populations (Smedley, Stith, & Nelson, 2003). For example, the report concluded that Afri- can Americans are relatively less likely to receive treatment for early-stage lung cancer, publicly insured Latinos and African Americans do not receive coro- nary artery bypass surgery at rates comparable to pub- licly insured nonminorities, and Latino and African American children on Medicaid experience relatively higher rates of hospitalization. Furthermore, the IOM study revealed that even when relevant patient characteristics are controlled for, racial and ethnic differences arise not only in terms of accessing care initially, but also after individuals have entered the healthcare system, a finding that supports Under Alexander, private individuals were barred from bringing a lawsuit under the disparate impact regulations, leaving the federal government as the sole enforcer when racial or ethnic minorities allege a vio- lation of the regulations.i Physical and Mental Disability Discrimination Like discrimination based on race or ethnicity, health- care discrimination premised on disability has a long, sad history in this country and, as with race, the health system itself is partly to blame for its perpetuation. For instance, historically, persons with mental disabilities were viewed from a medical standpoint as having little to offer to society, and they were, as a matter of prac- tice, shipped to mental asylums isolated from commu- nities. Those with physical disabilities were not spared discriminatory practices, either; because individuals with Down syndrome were viewed by medical practi- tioners as “Mongoloid idiots” and children with cere- bral palsy or other serious physical limitations were regularly viewed as unable to contribute to society, they were all simply institutionalized. These historical practices and perspectives resonate even in the mod- ern healthcare system, in which treatment opportuni- ties for the disabled are skewed toward institutional, rather than community, settings, and disease-specific limitations in health insurance are commonplace. However, passage of the Americans With Disabil- ities Act (ADA) in 1990 alleviated at least some of the problems associated with disability discrimination in health care. Like Title VI, the ADA is not specifically a “health law”; its intent is to extend to the disabled the maximum opportunity for community integra- tion in many sectors of society, including employ- ment, public services, public accommodations (i.e., privately owned entities open to the public), telecom- munications, and more. For this reason, it prohibits discrimination generally against disabled individuals who satisfy the essential requirements of a particular job, or who meet the qualification standards for a pro- gram, service, or benefit. But the ADA’s impact on health care for individuals is notable, in large part because the law defines “places of public accommodation” to include private hospitals and other private healthcare provid- ers. So, for example, a dentist in private practice who does not receive any federal funds for his services is nonetheless prohibited from discriminating against a person who is HIV-positive, as the well-known case of Bragdon v. Abbott (1990) makes clear. This rep- resents an important expansion of federal disability 128 Chapter 6 Individual Rights in Health might refuse to accept as patients individuals covered under Medicaid, or low-income individuals might fall victim to the practice of redlining, which refers to discrimination based on geographic location when companies offer goods and services to consum- ers. (Although insufficient data exist to know the extent of redlining in healthcare-related goods and services, industries such as home health care, pharmaceuticals, and managed care have come under particular scru- tiny [Perez, 2003].) Another example stems from the fact that healthcare providers (e.g., physician and den- tal practices, hospitals) sometimes elect to not operate in relatively poor communities, leaving residents of these communities at heightened risk for experiencing a shortage of adequate healthcare resources. Gender Discrimination Discrimination against women is also a problem in health care. This bias appears to be of particular concern in the area of coronary heart disease (Bess, 1995), in which delayed or disparate care could have severe conse- quences. While it may seem that gender discrimination in health care could be remedied under the Equal Pro- tection Clause of the federal Constitution, Equal Protec- tion claims are difficult to win because they require proof of both state action (a sufficient government connection to the discriminatory acts) and proximate causation (a cause-and-effect link between the discrimination and the harm suffered). Also, consider the fact that health- care practitioners who receive federal funds cannot face suit under Title VI for even obvious gender discrimina- tion, because Title VI’s prohibitions relate only to race, color, and national origin discrimination. Age Discrimination Finally, the medical care system also seems to be biased against older adults. Just one of several disturbing facts on the treatment front is that older adults sometimes do not receive needed surgical care because health professionals wrongfully assume that the chances of recovery are not good (Smith, 1996). Another concern pertains to insurance coverage, in that many employ- ers are attempting to rescind lifetime health coverage benefits to retired workers, even where the benefits had been promised as part of negotiated labor con- tracts. At first blush, this may not seem like a critical issue, because many retirees are at or beyond the age required for Medicare eligibility. But some retirees are not yet 65 years old, a retiree’s employer-sponsored benefits might provide more or different coverage than Medicare, and employer benefits might cover a retiree’s dependents, which Medicare does not do. facilities face accreditation standards. Food establish- ments are heavily regulated. Employers are bound by numerous occupational health and safety rules. Busi- nesses are constrained by pollution control measures. Tobacco products can be marketed in only certain ways. The purchase of guns is controlled, buildings have to abide by certain codes, motorcyclists must wear helmets. The list goes on and on. The government’s police powers are oftentimes invasive, a result that stems in part from the fact that the American colonies were battling multiple com- municable diseases during the time of the writing of the Constitution, and its drafters were thus well aware of the need for pervasive governmental public health powers. At the same time, the government may not overreach when restricting private autonomy in the name of public health promotion and protection. For example, police powers cannot be used as a form of punishment, they cannot be used arbitrarily and capriciously, and they cannot be used for purposes unrelated to public health and welfare. A key principle inherent to the use of police powers is that of coercion. This is so because, in a country founded upon the twin ideals of individu- alism and a limited government, many individu- als and businesses do not respond kindly to being told to conform with public health regulations that limit their actions. For example, sometimes a public health concern (e.g., pollution) requires a response (enhanced governmental regulation) that may not be in the best economic interests of an implicated party (a refinery). This is not to say that individuals and businesses do not voluntarily assume responsi- bilities and measures that are in the public’s interest. For instance, one effect of poor exercise habits— obesity—has enormous implications for the public’s health and for national healthcare costs. As the government would prefer that all individuals exercise for a minimum amount of time each week, but there is of course no law requiring this; erstock of the “no-duty to treat” principle approach to health rights differs from that of other developed countries of individual legal rights associated with health care taken when weighing individual rights against the public’s health advancements in medicine and against amorphous, potentially deadly risks to the public’s health, such as bioterrorism and fast-spreading influenzas. After a background section, this chapter consid- ers individual legal rights in health care, beginning with a brief overview of health rights under interna- tional and foreign law. This sets up a much lengthier discussion of healthcare rights in the United States, which for purposes of this chapter are classified according to an important distinction: legal rights to health care and rights that individuals can claim only within the context of the healthcare system—that is, only once they have found a way to access needed care.a Examples of the latter type of rights include the right to refuse unwanted treatment, the right to autonomy in making personal healthcare decisions, and the right to be free from wrongful discrimina- tion when receiving care. Finally, the chapter turns to a discussion of individual rights in the context of government-initiated public health efforts. This topic 113 Care and Public Health compulsive, measure. In obtaining the state’s license (permission) to practice medicine, the state does not require, and the licensee does not engage, that he will practice at all or on other terms than he may choose to accept. in labor, (Hurley v. Eddingfield, 1901) he made this In other words, obtaining a license to practice medicine does not obligate an individual to actually practice, or to practice in a particular fashion or with a particular clientele; the licensure requirement exists instead to filter out individuals who may not have the requisite knowledge or skills to practice medicine. The same can be said for obtaining a law license, or even a driver’s license: the former does not obligate a law- yer to practice, or to choose certain types of clients or cases; the latter does not require that a person actually ordered drive, or drive a certain make of car. As with a medical against the local boards license, the point of a law or driver’s license is to guar- antee that should the licensee choose to practice law or operate a motor vehicle, he or she is qualified to do so. Furthermore, you will recall from the facts provided in the vignette that Dr. Eddingfield was Mrs. Burk’s family physician, and many students believe that this fact is enough to establish a sufficient legal relationship between the two to hold Dr. Eddingfield accountable for the death of Mrs. Burk. However, the general legal rule is that physician–patient relationships are specific to “spells of illness” and that past treatment is not tan- tamount to an existing physician–patient relationship. Put another way, under the law a physician–patient relationship does not exist as a general, continuous matter—even with one’s family physician, internist, to curtail primary care physician, and so on—but rather it exists for a specific period of time and must be established (or renewed) accordingly. Note that this basic premise—that there is no fun- damental right to healthcare services in the United States—was not altered by the passage in 2010 of the Affordable Care Act (ACA). While it is arguable that the ACA moves the country in a direction that makes a legal right to health care more plausible down the road (Friedman & Adashi, 2010), and while there can be no arguing that it makes health care more accessible to mil- lions of people by virtue of its health insurance reforms (as discussed later in this chapter and in greater detail elsewhere), the ACA does not create a right to care. As you begin to think through the significance and implications of the no-duty principle, it is import- ant to understand that there are many other legal principles and health laws that define the relation- ship between an individual and another health system stakeholder (e.g., a physician, hospital, or government program). In fact, there are several federal and state Background 115 health care, and so on (Davis, 1993). But in a series of cases, the Supreme Court rejected the notion of a constitutional right to welfare. Consider the right to education. Even though every state provides free public schools and makes education for minors compulsory, there is no national, generalized legal right to education. In the case of San Antonio Independent School District v. Rodriguez (1973), the Supreme Court ruled that education is not a fundamental right under the federal Constitution’s Equal Protection Clause. The plaintiffs in the Rodri- guez case were Mexican-American parents whose children attended elementary and secondary schools in an urban San Antonio school district. They had attacked as unconstitutional Texas’s system of financ- ing public education and filed the suit on behalf of school children throughout the state who were mem- bers of minority groups or who resided in relatively poor school districts. But the court turned the plain- tiffs’ argument away, noting that although education is one of the most important services states perform, to every it is not among the rights afforded explicit protection under our Federal Constitution. Nor do we find any basis for saying it is implicitly so protected.... [T]he undisputed importance of education will not alone cause this Court to depart from the usual standard for reviewing a State’s social and economic legislation. (San Antonio Indep. School Dist. v. Rodriguez, 1973) In the wake of the Rodriguez decision, several states interpreted their own constitutions as prohibit- ing inequitable methods of financing public education, thereby recognizing on some level a right to a mini- mally “meaningful” education. Subsequently, lawyers and social activists seeking to promote equal access to all manner of critical services seized on these state determinations, arguing that an egalitarian approach to constitutional interpretation should not be limited to education (Stacy, 1993). Note, for example, how one author’s writings about the right to education could just as well have been written with respect to health care: Requiring an adequate education will help to fulfill our nation’s promise, articulated in Brown [v. Board of Education], that an indi- vidual be free to achieve her full potential. Ensuring educational adequacy will pro- mote children’s emotional and intellectual development, their career path and earning potential and thus their success throughout life. A meaningful education offers the hope that children can escape the degradation of Care and Public Health care as a fundamental right, and it is the only devel- oped nation that has not implemented a system for insuring at least all but the wealthiest segment of its population against healthcare costs (Jost, 2003, p. 3). In essence, other high-income nations with social democracies treat the provision of health care as a social goodb (i.e., something that could be supported through private enterprise but is instead supported by the government and financed from public funds). Fur- thermore, it is worth noting that nations that provide universal healthcare entitlements have not been bank- rupted as a result. In fact, according to Professor Tim- othy Jost, “all of the other developed nations spend less on health care than does the U.S., in terms of both dollars per capita and proportion of gross domestic product” (Jost, 2003, p. 3). A foreign nation’s universal healthcare rights— whether an unlimited right to health, a right to med- ical care generally or to a basic package of services, a right to healthcare insurance, or something else—exist as the result of either a commitment to human rights principles generally or fidelity to the particular coun- try’s own constitution. When recognized by govern- ments, human rights accrue to all individuals because the rights are based on the dignity and worth of the human being; thus, technically, a human right exists regardless of whether positive law (a constitution or statute) has given it expression (Barnes & McChrystal, 1998). Examples of positive expressions of health as a human right include Article 25 of the 1948 Univer- sal Declaration of Human Rights, which states that “everyone has the right to a standard of living ade- quate for the health and well-being of himself and of his family, including... medical care... and the right to security in the event of... sickness [or] disability” (Claiming Human Rights, 2010), and the Constitution of the World Health Organization, which says that “the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” (World Health Organi- zation, 2006). In terms of national constitutions, some two- thirds of constitutions worldwide specifically address health or health care, and almost all of them do so in universal terms, rather than being limited to certain populations (Kinney & Clark, 2004). For example, consider the health-related aspects of the constitutions of four politically and culturally diverse countries— Italy, the Netherlands, South Africa, and Poland—that have some type of “right to health”: Italy’s Constitution guarantees a right to health; under the Dutch Consti- tution, the government is mandated “to promote the Individual Rights and the Healthcare System 117 other major area of law. As described earlier in this chapter, universal rights to health care are virtually nonexistent in this country, even though this stance renders it almost solitary among the world’s devel- oped nations. of the scope This is not to say that the United States has not place in the contemplated health care as a universal, basic right. For instance, in 1952, a presidential commission stated that “access to the means for attainment and preser- vation of health is a basic human right” (President’s Commission, 1983, p. 4). Medicaid and Medicare were the fruits of a nationwide debate about universal healthcare coverage. And during the 1960s and 1970s, the claim that health care was not a matter of privi- lege, but rather of right, was “so widely acknowledged as almost to be uncontroversial” (Starr, 1982, p. 389). Nor is it to say that certain populations do not enjoy healthcare rights beyond those of the general public. Prisoners and others under the control of state gov- ernments have a right to minimal health care (Wing, 1993), some state constitutions expressly recognize a right to health or healthcare benefits (for example, Montana includes an affirmative right to health in its constitution’s section on inalienable rights), and indi- viduals covered by Medicaid have unique legal enti- tlements. Finally, it would be inaccurate in describing healthcare rights to cover only rights to obtain health care in the first instance, because many important healthcare rights attach to individuals once they man- age to access needed healthcare services. The remainder of this section describes more fully the various types of individual rights associated with the healthcare system. We categorize these rights as follows: of its coun- 1. Rights related to receiving services explicitly provided under healthcare, health financ- ing, or health insurance laws—for example, the Examination and Treatment for Emer- gency Medical Conditions and Women in 2. Labor Act, Medicaid, and the ACA Rights concerning freedom of choice and freedom from government interference when making healthcare decisions—for example, choosing to have an abortion 3. The right to be free from unlawful discrim- ination when accessing or receiving health care—for example, Title VI of the federal Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, or national origin by entities that receive federal funding (Annas, 2004; Barnes & McChrystal, 1998, p. 12) Care and Public Health severe pain) such that the absence of imme- diate medical attention could reasonably be expected to result in (i) placing the health of the individual (or, with respect to a preg- nant woman, the health of the woman or her unborn child) in serious jeopardy, (ii) serious impairment to bodily functions, or (iii) seri- ous dysfunction of any bodily organ or part; or with respect to a pregnant woman who is having contractions, that there is inadequate time to effect a safe transfer to another hospi- tal before delivery, or that transfer may pose a threat to the health or safety of the woman or the unborn child. (Examination and Treat- ment, 2011) The second key duty required of hospitals under EMTALA is to either stabilize any condition that meets the preceding definition or, in the case of a hospital without the capability to treat the emer- gency condition, undertake to transfer the patient to another facility in a medically appropriate fashion. A proper transfer is effected when, among other things, the transferring hospital minimizes the risks to the patient’s health by providing as much treatment as is within its capability, a receiving medical facility has agreed to accept the transferred patient, and the trans- ferring hospital provides the receiving facility all rele- vant medical records. The legal rights established under EMTALA are accompanied by heavy penalties for their violation. The federal government, individual patients, and “dumped-on” hospitals can all initiate actions against a hospital alleged to have violated EMTALA, and the federal government can also file a claim for civil money penalties against individual physicians who negligently violate an EMTALA requirement. the part Rights Under Healthcare Financing Laws: that Medicaid Many laws fund programs that aim to expand access to health care, such as state laws authorizing the establishment of public hospitals or health agencies, and the federal law establishing the vast network of community health clinics that serve medically under- served communities and populations. However, the legal obligations created by these financing laws are generally enforceable only by public agencies, not by individuals. The Medicaid program is different in this respect. (Medicaid is covered elsewhere in greater depth, but because of its importance in the area of individual Individual Rights and the Healthcare System 119 health benefits” that must be covered; and the creation of state health insurance “exchanges” through which individuals and small employer groups can purchase high-quality health insurance in a virtual market- place that is substantially regulated and that simplifies the job of learning about, selecting, and enrolling in insurance plans. The ACA also reforms the public health insurance market, primarily through an expansion of Medicaid eligibility to cover all non-elderly low-income persons who are legal residents or citizens (this expansion is now voluntary on the part of states, as the result of a Supreme Court decision described in a subsequent chapter). If fully implemented, this reform would substantially close one of Medicaid’s last remain- ing coverage gaps for the poor—namely, the pro- gram’s historical denial of coverage for nonpregnant, working-age adults without minor children—and in so doing would provide insurance coverage (and the resulting access to health care that often follows cov- erage) to many millions of people. healthcare com- Rights Related to Freedom of Choice and Freedom From Government Interference EMTALA and Medicaid are remarkable in terms of the rights to health care that they each provide, though as mentioned earlier in this chapter, individual rights that attach within the context of healthcare provision can be equally important. Important individual rights within health care include the right to make informed healthcare decisions and the right to personal privacy and autonomy. The Right to Make Informed Healthcare Decisions One of the most important healthcare rights is the right of individual patients to make informed deci- sions about the scope and course of their own care. This includes the right to refuse treatment, regard- less of the treatment’s nature or urgency. That is, the right to refuse treatment exists whether the patient is considering ingesting prescribed medication for minor pain, undergoing a minimally invasive test or procedure, or consenting to a major, potentially life- sustaining operation like the removal of a brain tumor. However, the right pertaining to informed decision making does not come without qualifiers and excep- tions, as described here. Modern notions of informed consent have their roots in the Nuremberg Code, which derived from the Nuremberg trials in the late 1940s of German Care and Public Health triggered, what information satisfies the legal require- ment? On this matter the court made several obser- vations: that the patient’s right of “self-decision” is paramount, that the right to consent can be properly exercised only if the patient has sufficient information to make an “intelligent choice,” that the sufficiency test is met when all information “material to the decision” is disclosed, and that the disclosure’s legality should be measured objectively, not subjectively from the perspective of a particular physician or patient. From these observations, the court settled on three required pieces of disclosed information: a proposed treat- ment’s inherent and potential risks, any alternatives to a proposed treatment, and the likely outcome of not being treated at all. Applying these criteria, the court ruled that Dr. Spence’s failure to disclose even the tini- est risk of paralysis resulting from the laminectomy entitled Canterbury to a new trial. As mentioned earlier, the right to make informed healthcare decisions is not boundless. For example, the court in Canterbury wrote that where disclosure of a treatment’s risks would pose a threat of harm to the patient (for example, because it would severely complicate treatment or psychologically damage the patient) as to become “unfeasible or contraindicated from a medical point of view,” the physician’s duty to disclose could be set aside. Furthermore, a patient’s competency from a legal vantage point plays a major role in his or her ability to consent to treatment. The Canterbury decision and its progeny have over the years been interpreted expansively, and today the right to make informed healthcare decisions has many facets beyond a clear explanation of proposed treat- ments, potential risks and complications, and the like. For example, patients have the right to know whether outside factors, such as research interests or finan- cial considerations, are coloring a physician’s think- ing about a proposed course of treatment; patients whose first language is not English have the right to an interpreter; and patients have the right to designate in advance their treatment wishes, whether through written advance directives or another individual. his patients. The Right to Personal Privacy Another right related to freedom of choice and free- dom from government interference is the constitu- tional right to personal privacy. Although the federal Constitution makes no explicit mention of the right to privacy, the Supreme Court has recognized some form of it since the 1890s.d The court has taken a more or less two-pronged approach to the right. The first approach defines the protected personal interest as Individual Rights and the Healthcare System 121 prohibiting unmarried individuals from using contra- ception (Eisenstadt v. Baird, 1972). At the same time, federal courts were confronted with cases asking them to determine how the right to privacy applied in the context of abortion. The remainder of this section analyzes the courts’ response to this particular issue. We selected the constitutional right to abortion as the focal point of the right to privacy discussion because it is not only one of the most contested rights in a health context, but also one of the most contested areas of public policy generally. The Roe v. Wade Decision. Few judicial decisions have affected this country’s legal, political, and social landscape as much as Roe v. Wade (1973).f In 1970, an unmarried pregnant woman filed a lawsuit under the pseudonym “Roe” challenging the constitutional- ity of a Texas criminal law that prohibited procuring or attempting an abortion at any stage of pregnancy, except for the purpose of saving the pregnant woman’s life. Roe was joined in the lawsuit by a doctor who per- formed abortions in violation of the law. They argued that the constitutional right to privacy articulated in Griswold and its progeny included a woman’s right to choose to obtain an abortion. Texas, through district attorney Henry Wade, claimed that the law was per- missible because the state had a compelling interest in protecting women from an unsafe medical proce- dure and in protecting prenatal life. The federal trial court agreed with Roe and declared the law unconsti- tutional, and Texas immediately appealed to the U.S. Supreme Court, which agreed to hear the case (in rare circumstances, the Supreme Court will hear a case without an intermediate appellate court ruling). At the Supreme Court, the work of drafting the majority opinion in Roe v. Wade fell to Justice Harry Blackmun, who earlier in his legal career had been counsel to a well-known and highly regarded medi- cal clinic. By a 7–2 margin, the court ruled that the constitutional right to privacy, which in its view most strongly emanates from the 14th Amendment’s due process protections, is broad enough to encompass a woman’s decision to terminate her pregnancy. Once the court established that a woman has a constitutional right to obtain an abortion, it went on to discuss the limits of that right. Roe had argued that the right to obtain an abortion is absolute and that no state or federal law abridging the right could be enacted. The court did not agree. Justice Blackmun wrote that states have both an interest in protecting the welfare of its citizens and a duty to protect them and that the duty extends to the unborn. According to the court, “a State may properly assert important Care and Public Health battle at the Supreme Court over abortion and the right to privacy. The Planned Parenthood of Southeastern Penn- sylvania v. Casey Decision. At issue in the 1992 case of Planned Parenthood of Southeastern Pennsylvania v. Casey were several amendments to Pennsylvania’s Abortion Control Act that made it more difficult for a pregnant woman to obtain an abortion: one provi- sion required that a woman seeking an abortion be provided with certain information at least 24 hours in advance of the abortion; a second stated that a minor seeking an abortion had to secure the informed con- sent of one of her parents, but included a “judicial bypass” option if the minor did not wish to or could not obtain parental consent; a third amendment required that a married woman seeking an abortion had to sub- mit a signed statement indicating that she had notified her husband of her intent to have an abortion, though certain exceptions were included; and a final provision imposed new reporting requirements on facilities that offered abortion services. The revised law exempted compliance with these requirements in the event of a “medical emergency.” Before any of the new provisions took effect, they were challenged by five Pennsylvania abortion clinics and a group of physicians who performed abortions. The federal trial court struck down all of the provi- sions as unconstitutional violations under Roe. On appeal, the Third Circuit Court of Appeals reversed and upheld all of the provisions, except for the hus- band notification requirement, as constitutional. The plaintiffs appealed to the Supreme Court, which agreed to hear the case. The court’s 5–4 decision in favor of the plaintiffs in Casey expressly acknowledged the widespread confu- sion over the meaning and reach of Roe, and it used its opinion in Casey to provide better guidance to legisla- tures seeking to regulate abortion as a constitutionally protected right. Specifically, the court in Casey sought to define more precisely both the constitutional rights of pregnant women and the legitimate authority of states to regulate some aspects of the abortion deci- sion. The deeply divided court wrote the following: It must be stated at the outset and with clar- ity that Roe’s essential holding, the holding we reaffirm, has three parts. First is a recognition of the right of the woman to choose to have an abortion before viability and to obtain it without undue interference from the State. Before viability, the State’s interests are not strong enough to support a prohibition of Individual Rights and the Healthcare System 123 The court majority in Casey provided a new tem- plate for lower courts to use in deciding the consti- tutionality of state abortion regulations. Likewise, the opinion offered guidance to state legislatures as to what kinds of abortion restrictions were likely to withstand a constitutional attack. Nonetheless, some state legislatures have tested the boundaries of Casey by enacting bans on a procedure known as “partial birth” abortion, an issue to which we now turn. The Stenberg v. Carhart Decision. The undue bur- den standard articulated in Casey for assessing the constitutionality of abortion regulations was put to the test in Stenberg v. Carhart (2000). At issue in the case was a Nebraska criminal law banning “an abor- tion procedure in which the person performing the abortion partially delivers vaginally a living unborn child before killing the unborn child and completing the delivery.” It further defined “partially delivers vag- inally a living unborn child before killing the unborn child” to mean “deliberately and intentionally deliv- ering into the vagina a living unborn child, or a sub- stantial portion thereof, for the purpose of performing a procedure that the person performing such proce- dure knows will kill the unborn child and does kill the unborn child.” The Nebraska law penalized physicians who performed a banned abortion procedure with a prison term of up to 20 years, a fine of up to $25,000, and the automatic revocation of the doctor’s license to practice medicine in Nebraska. Dr. Leroy Carhart, a Nebraska physician who per- formed abortions, filed a lawsuit seeking a declara- tion that the Nebraska law violated the constitutional principles set forth in Roe and Casey. After a lengthy trial, a federal district court agreed with Dr. Carhart and declared the Nebraska law unconstitutional. The Court of Appeals for the Eighth Circuit agreed, con- cluding that Nebraska’s statute violated the Constitu- tion as interpreted by the Supreme Court in Casey. The Supreme Court then granted review. The court was unequivocal in its opinion in Sten- berg that the case was not a forum for a discussion on the propriety of Roe and Casey, but rather an appli- cation of the rules stated in those cases. In applying the undue burden standard to pre-viability abor- tions, the court considered trial court testimony from expert witnesses regarding several different abortion procedures that were then current in medical prac- tice to flesh out the procedures’ technical distinctions and to determine whether the procedures fell within Nebraska’s definition of “partial birth” abortion. The court determined that two distinct abortion proce- dures were r elevant—dilation and evacuation (D&E), Care and Public Health fetal head is outside the body of the mother, or, in the case of a breech presentation, any part of the fetal trunk past the navel is out- side the body of the mother, for the purpose of performing an overt act that the person knows will kill the partially delivered living fetus. (PBABA, 2003) that ban- PBABA contains an exception allowing for these otherwise illegal abortions when necessary to pro- tect a pregnant woman’s life, but not health. The law’s authors claim that the banned procedure is never nec- essary to protect the health of a pregnant woman and thus that an exception is not required. Separate lawsuits challenging PBABA were filed in federal courts in California, Nebraska, and New York. All three federal trial courts concluded that the lack of a health exception necessarily rendered the law unconstitutional under Supreme Court prece- dent. With enforcement of PBABA halted, the federal government appealed all three cases. The appellate courts that examined PBABA all found that substan- tial medical authority exists supporting the necessity of the banned procedure and declared PBABA uncon- stitutional because of its lack of a health exception. As noted, the fate of PBABA was then decided by the Supreme Court. The Gonzales v. Carhart Decision. The Supreme Court upheld the constitutionality of the PBABA in Gonzales v. Carhart, another 5–4 decision. The court rejected the reasoning of the appellate courts and found that PBABA was not on its face “void for vagueness” (a doctrine that permits courts to reject statutes under which a layperson could not generally understand who is being regulated or what is being prohibited) and did not pose an undue burden on the right to receive an abortion under Casey. Although the court reaffirmed again the various basic principles of Roe and Casey—that women have an unfettered right to an abortion pre-viability, that the government has the power to restrict abortions post-viability, and that the government has an interest from the outset of pregnancy in protecting the health of the woman and the fetus—the court in Carhart focused on the latter and held that the government’s legitimate interest in promoting fetal life would be hindered if the act was invalidated. The court first ruled that PBABA was not void for vagueness simply because the law prohibits per- forming intact D&Es. According to the court, the law puts doctors on notice of the prohibited conduct by adequately describing the intact D&E procedure and requiring that the doctor have knowledge that he is Individual Rights and the Healthcare System 125 key congressional sponsors of the measure) provided federal money to states to build and refurbish hospi- tals after World War II, but explicitly sanctioned the construction of segregated facilities: A hospital will be made available to all per- sons residing in [its] territorial area... with- out discrimination on account of race, creed, or color, but an exception shall be made in cases where separate hospital facilities are provided for separate population groups, if the plan makes equitable provision on the basis of need for facilities and services of like quality for each such group. (Hospital Survey and Construction Act, 1946) This provision was not ruled unconstitutional until the 1963 case of Simkins v. Moses H. Cone Memo- rial Hospital, which has been referred to as the “Brown v. Board of Education of health care” (Smith, 1999). Simkins also helped fuel the passage of the Civil Rights Act of 1964, this country’s most important civil rights legislation of the 20th century. For purposes of health care, Title VI of the 1964 Act was of specific impor- tance. Title VI is discussed in more depth later in this chapter; in sum, this portion of the Civil Rights Act makes it illegal for programs and activities that receive federal funding to discriminate on the basis of race, color, or national origin. Notwithstanding the healthcare rewards brought about by the civil rights movement—Title VI, the pas- sage of Medicaid and Medicare, the establishment of federally financed community health centers—the focus on healthcare civil rights was waning as early as 1968. Several factors led to this decline, but what is most striking is that compared to the progress made by public and private civil rights efforts over the past 45 years in education, employment, and housing, civil rights enforcement in the healthcare field has been anything but sustained. Of course, even an enduring and well-funded enforcement effort is no guarantee of wiping out dis- crimination, regardless of its social context. There are, unfortunately, vestiges of discrimination in many important aspects of American society, including the healthcare system. Moreover, although historically healthcare discrimination on the basis of race and eth- nicity has received the most attention, the existence of discrimination in health care on the basis of socio- economic status, disability, age, and gender also raises troubling questions. The remainder of this section touches briefly on each of these areas, describing laws (where applicable) or legal theories used to combat the particular healthcare discrimination at issue. Care and Public Health the notion that both the system itself and physician practice style contribute to disparities. This notion is, of course, quite controversial, because it suggests that physician decision making and clinical practice can increase the likelihood of racially disparate outcomes. what The key federal law used to combat race and eth- nicity discrimination in health care is Title VI of the 1964 Civil Rights Act, which states that “no person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimina- tion under any program or activity receiving federal financial assistance.” Because it attaches only to recip- ients of federal funding, Title VI does not reach, for example, health professionals who do not directly par- ticipate in government-sponsored health programs; nor does it reach physicians whose only participation in federal assistance programs is under Medicare Part B (the basis for this exemption is historical and purely political, and the exemption is not codified in Title VI statutory or regulatory law [Smith, 1999, pp. 115– 128]). Nonetheless, Title VI has long had the potential to greatly impact the field of health care, because an enormous amount of federal funding has been poured into the healthcare enterprise over the past 50 years. The concept of “discrimination” under Title VI applies both to intentional acts and to actions or pol- icies that unintentionally have the effect of discrimi- nating against racial and ethnic minorities. This is so because federal regulations implementing the Title VI statute (which explicitly prohibits only intentional discrimination) reach actions that, even if neutral on their face, have a disproportionate adverse impact (or effect) on members of minority groups. In the case of healthcare access and delivery, you can imagine sev- eral types of conduct that might potentially violate the Title VI disproportionate impact regulations. For example, were a hospital to segregate patients by source of payment—say, by maintaining a ward or floor that treated only patients covered under Medicaid—racial and ethnic minorities may be adversely impacted, given the overall makeup of the Medicaid population. Similarly, the Title VI regulations could be violated if a managed care organization enrolled both privately and publicly insured persons but allowed participat- ing providers to refuse to accept as patients those indi- viduals covered by Medicaid. The disproportionate impact regulations are cru- cial to realizing Title VI’s full force, because much of the racism in post-1954 America does not take the form of overt, intentional acts. However, as a result of the 2001 Supreme Court decision in Alexander v. Sandoval, these regulations were severely undercut. Individual Rights and the Healthcare System 127 law because prior to the ADA, only recipients of fed- eral funds were proscribed from discriminating on the basis of disability. Note also how this expanded con- cept of public accommodations differs from Title VI of the Civil Rights Act, which still requires the receipt of federal money on the part of the offending entity to trigger protections for racial and ethnic minorities. Although the ADA has dramatically altered the disability law landscape, it is not without limita- tions. For example, the regulations implementing the ADA’s statutory text require entities that implement public programs and services to make only “reason- able modifications”—but not “fundamental alter- ations”—to those programs and services. Under the ADA, a fundamental alteration is one that would change the essential nature of a public program or service. Whether a requested change to a public pro- gram or service by a disabled individual amounts to a “reasonable” or a “fundamental” one is potentially determinative to the outcome of the request. Why? Because if a court determines that the request would alter the essential nature of the program or service at issue, it is powerless under the ADA to order the change. Another way of understanding this reason- able modification/fundamental alteration dichotomy is to recognize that fundamental alterations to public services—alterations that might actually be necessary to achieve at least the spirit of the ADA’s loftiest goals and meet the expectations of a modern, enlightened society—could be made only by the political branches of government, not by the courts. Another important limitation of the ADA (at least as it has been interpreted by most courts) is that it does not prohibit arbitrary insurance coverage lim- its attached to certain medical conditions. A stark example of this is found in the case of Doe v. Mutual of Omaha Insurance Company (1999), in which a fed- eral appellate court ruled that a lifetime benefit limita- tion in a health insurance policy of $25,000 for AIDS or AIDS-related conditions did not violate the ADA, even though the very same policy set a $1 million life- time limit for other conditions. disabled Socioeconomic Status Discrimination Compared to race or disability discrimination in healthcare access and treatment, healthcare discrim- ination based on class gains little attention—even though socioeconomic status is independently asso- ciated with health status, and the negative effects of poverty on health and healthcare access are incontro- vertible. Class-related healthcare discrimination can take many forms. For example, healthcare providers Care and Public Health who are ▸▸ Individual Rights in a Public Health Context The discussion thus far has focused on healthcare legal rights that individuals can claim in the con- text of access, receipt of services, freedom of choice, and antidiscrimination. In each of these areas, how- ever, the right claimed is not absolute. For exam- ple, EMTALA does not make illegal all transfers of indigent patients from private hospitals to public ones; rather, it requires that patients be medically stabilized before a transfer can occur. Even eminent civil rights laws do not provide blanket protections, because they might be triggered only where federal funding is present, or where the assistance requested would not fundamentally alter a government health program. In this section, we consider restrictions on indi- vidual rights and liberties of a different sort: those that derive not from the limitations of specific laws, but rather from governmental police pow- ers used to protect the general public’s health and welfare. One simple way to think about individual rights in a public health context is to use a balancing approach—what might the appropriate legal trade- offs be between private rights and public welfare? Public discussion of this trade-off intensified after the terrorist attacks of September 11, 2001, because many government actions taken in their wake— the passage of new laws, the tightening of existing regulations, the detainment of alleged terrorists— starkly raised the question of where to draw the line between individual autonomy and government authority to restrain that autonomy in the name of public welfare and national security. The attacks raised new questions relating to public health law as well, including whether the potential for a bioterror- ist attack using smallpox should compel the federal government to vaccinate individuals—even against their will—against the virus in order to protect the public at large in the event of an attack. Overview of Police Powers Police powers represent state and local government authority to require individual conformance with established standards of conduct. These standards are designed to promote and protect the public’s health, safety, and welfare, and to permit government con- trol of personal, corporate, and other private interests. The government’s police powers are broad and take many forms. Healthcare professionals are required to obtain licenses from government agencies. Healthcare Individual Rights in a Public Health Context 129 question of where to draw the line between personal/ economic freedom on the one hand, and the public welfare on the other. This question was taken up by the Supreme Court in Jacobson v. Massachusetts (1905), perhaps the most famous public health law decision in the court’s history and the one to which we alluded in the second factual scenario in Box 6-1 at the opening of this chapter. The facts in Jacobson are straightforward enough. At the turn of the 20th century, the state of Massa- chusetts enacted a law granting local health boards the power to require vaccination when necessary to protect the public’s health or safety. In 1902, the Cam- bridge Board of Health, in the throes of attempting to contain a smallpox outbreak, took the state up on its offer and issued an order requiring all adults in the city to be vaccinated against the disease. Henning Jacobson refused vaccination on the ground that he previously suffered negative reactions to vaccinations. Jacobson was fined $5 for his refusal, a penalty upheld by the state’s highest court. Jacobson appealed to the U.S. Supreme Court, setting the stage for a decision that, more than 100 years later, remains both controversial and at least symbolically forceful (Gostin, 2005). Like the enduring tension between private inter- ests and public welfare underpinning public health law generally, the Jacobson decision amounts to “a classic case of reconciling individual interests in bodily integrity with collective interests in health and safety” (Mariner, Annas, & Glantz, 2005). The 7–2 decision went the state’s way, with the Supreme Court recognizing that police powers were generally broad enough to encompass forced vaccination. Respond- ing to Jacobson’s argument that the Massachusetts law impermissibly infringed on his constitutional right to liberty, the court wrote the following: a result, The liberty secured by the Constitution of the United States to every person within its

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