Healthcare Policy & Law
HSA405 CHAPTER 6
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 Treatment and Active Labor Act—or, for reasons soon to become clear, the “patient antidumping 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: Examination and Treatment for Emergency Medical Conditions and Women in Labor Act
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 “dumping” 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 the part of hospitals. At its core, EMTALA includes two related duties, which technically attach only to hospitals that 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 individuals 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 hospital’s established emergency care guidelines. EMTALA defines an emergency medical condition as a
medical condition manifesting itself by acute symptoms of sufficient severity (including severe pain) such that the absence of immediate medical attention could reasonably be expected to result in (i) placing the health of the individual (or, with respect to a pregnant woman, the health of the woman or her unborn child) in serious jeopardy, (ii) serious impairment to bodily functions, or (iii) serious 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 hospital before delivery, or that transfer may pose a threat to the health or safety of the woman or the unborn child. 20
The second key duty required of hospitals under EMTALA is to either stabilize any condition that meets the above definition or, in the case of a hospital without the capability to treat the emergency condition, undertake to transfer the patient to another facility in a medically appropriate fashion. A proper transfer is effectuated 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, when a receiving medical facility has agreed to accept the transferred patient, and when the transferring hospital provides the receiving facility all relevant 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.
Rights Under Healthcare Financing Laws: 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 underserved 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 healthcare rights, we mention it also in this context.) Although most certainly a law concerning healthcare financing, Medicaid is unlike most other health financing laws in that it confers the right to individually enforce program obligations through the courts.21(pp419-424) This right of individual enforcement is one of the reasons 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 Affordable Care Act
As you will learn in subsequent chapters, the ACA is far more than a law that just concerns health insurance; in fact, it is a sweeping set of reforms that touch on healthcare quality, public health practice, health disparities, community health centers, healthcare fraud and abuse, comparative effectiveness research, the health workforce, health information technology, long-term care, and more. However, for purposes of this chapter, we mention it briefly it in terms of its impact on the rights of individuals to access health insurance and to equitable 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 policies, 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, disability status, and more into a social good whose availability is essential to individual and population health.22 The key elements of this shift include: a ban on exclusion and discrimination based on health status or pre-existing health conditions; new protections that ensure that, once covered by insurance, individuals will have access to necessary care without regard to artificial annual or lifetime expenditure 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 financial 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 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 marketplace 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 remaining coverage gaps for the poor—namely, the program’s historical denial of coverage for non-pregnant, working-age adults without minor children—and in so doing would provide insurance coverage (and the resulting access to health care that often follows coverage) TO MANY MILLIONS OF PEOPLE.
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 decisions about the scope and course of their own care. This includes the right to refuse treatment, regardless of the treatment’s nature or urgency: 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 exceptions, 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 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 concerning federally funded biomedical research.23 But if the Nuremberg Code can be thought of as the roots of U.S. informed consent law, then the decision in Canterbury v. Spence24 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 where the roof 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 operation, while appearing to recuperate normally, Canterbury fell from his hospital bed while no attendant was on hand and a few hours later began suffering paralysis 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 operation. 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 (considered second in national importance to the Supreme Court).c The decision includes two important determinations 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 dangers inherently and potentially involved.”25 The court viewed this duty as a logical and modest extension of a physician’s existing general duty to his patients. Importantly, the court discarded the notion that “the patient should ask for information before the physician is required to disclose.”26 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 triggered, what information satisfies the legal requirement? On this matter the court made several observations: 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 treatment’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 tiniest 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 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 treatments, potential risks and complications, and the like. For example, patients have the right to know whether outside factors, like research interests or financial considerations, are coloring a physician’s thinking 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.
The Right to Personal Privacy
Another right related to freedom of choice/freedom from government interference is the constitutional 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 defines the protected personal interest as “informational privacy,” meaning the limiting of others’ access to and use of an individual’s private information.e The second approach is concerned with individual autonomy and freedom from governmental interference in making basic personal decisions, and is the type of privacy right focused on in this section. 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 beginning with the Supreme Court’s landmark 1965 decision in Griswold v. Connecticut,27 in which the court considered the constitutionality of a state law criminalizing the provision of contraception to married 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).28
After the Griswold decision, advocates of the constitutional 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,29 as were laws prohibiting unmarried individuals from using contraception.30 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.31 In 1970, an unmarried pregnant woman filed a lawsuit under the pseudonym “Roe” challenging the constitutionality 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 performed 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 permissible because the state had a compelling interest in protecting women from an unsafe medical procedure and in protecting prenatal life. The federal trial court agreed with Roe and declared the law unconstitutional, 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 medical 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 interests in safeguarding health, in maintaining medical standards, and in protecting potential life. At some point in pregnancy, these respective interests become sufficiently compelling to sustain regulation of the factors that govern the abortion decision.”32 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 decision 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 reasonably related to maternal health.
c. For the stage subsequent to viability, the State, in promoting its interest in the potentiality of human life may, if it chooses, regulate, and even proscribe, abortion except where it is necessary, in appropriate medical judgment, for the preservation of the life or health of the mother.33
As a matter of both policy and law, the Roe decision has been vigorously criticized.34–37 For example, detractors claim that the court improperly made social policy by “finding” an expansive 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.f
Regardless of these and other criticisms, the Roe decision was monumental beyond its legal implications. It galvanized political forces opposed to abortion and prompted a movement to create ways to discourage 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 battle at the Supreme Court over abortion and the right to privacy.
The Planned Parenthood of Southeastern Pennsylvania v. Casey Decision At issue in the 1992 case of Planned Parenthood of Southeastern Pennsylvania v. Casey38 were several amendments to Pennsylvania’s Abortion Control Act that made it more difficult for a pregnant woman to obtain an abortion: one provision 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 consent 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 submit 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 provisions as unconstitutional violations under Roe. On appeal, the Third Circuit Court of Appeals reversed and upheld all of the provisions, except for the husband 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 confusion over the meaning and reach of Roe, and it used its opinion in Casey to provide better guidance to legislatures 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 decision. The deeply divided court wrote:
It must be stated at the outset and with clarity 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 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 contradict one another; and we adhere to each.39
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 touchstone. Second, the pregnant woman, not her attending physician, effectuates 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 constitutionality of state abortion regulations. Under this new standard, a state may not prohibit abortion prior to fetal viability, but it may promulgate abortion regulations as long as they do not pose a “substantial obstacle” 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 Pennsylvania’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.
The court majority in Casey provided a new template for lower courts to use in deciding the constitutionality 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 burden standard articulated in Casey for assessing the constitutionality of abortion regulations was put to the test in Stenberg v. Carhart.40 At issue in the case was a Nebraska criminal law banning “an abortion 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 vaginally a living unborn child before killing the unborn child” to mean “deliberately and intentionally delivering into the vagina a living unborn child, or a substantial portion thereof, for the purpose of performing a procedure that the person performing such procedure 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 performed abortions, filed a lawsuit seeking a declaration 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, concluding that Nebraska’s statute violated the Constitution as interpreted by the Supreme Court in Casey. The Supreme Court then granted review.
The court was unequivocal in its opinion in Stenberg that the case was not a forum for a discussion on the propriety of Roe and Casey, but rather an application of the rules stated in those cases. In applying the undue burden standard to pre-viability abortions, the court considered trial court testimony from expert witnesses regarding several different abortion procedures then-current in medical practice 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 procedures were relevant—dilation and evacuation (D&E), and dilation and extraction (D&X)—and that the Nebraska law’s vague definition of “partial birth” abortion 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 that banning 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 invalidated 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 medical authority” indicated that the D&X procedure is in some cases the safest abortion procedure available.41
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 abortion 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 below.
PBABA establishes criminal penalties for “any physician who … knowingly performs a partial birth abortion and thereby kills a human fetus.”42 Attempting 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 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 outside the body of the mother, for the purpose of performing an overt act that the person knows will kill the partially delivered living fetus.43
Furthermore, PBABA contains an exception allowing for these otherwise illegal abortions when necessary to protect a pregnant woman’s life, but not health. The law’s authors claim that the banned procedure is never necessary 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 precedent. With enforcement of PBABA halted, the federal government appealed all three cases. The appellate courts that examined PBABA all found that substantial medical authority exists supporting the necessity of the banned procedure and declared PBABA unconstitutional 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 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 performing 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 performing the intact D&E for the purpose of destroying 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 anatomical point in the pregnant 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 government’s interest in protecting fetal life and the government 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 unconstitutional. Deferring to Congress because there are other safe procedures besides intact D&E that a doctor may use to perform an abortion and because according to the court PBABA promotes fetal life, the court simply declared the law constitutional notwithstanding 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.g 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, healthcare 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 professional medical societies were all separated based on race. In places where Jim Crow laws had not been passed, corporate bylaws and contracts between private parties often had the same discriminatory effect, and these “Jim Crow substitutes” were generally honored and enforced by the courts that interpreted them.
Federal law also played a role in perpetuating racially segregated health care. For example, the Hospital Survey and Construction Act of 1946 (more commonly known as the Hill–Burton Act, after the key congressional sponsors of the measure) provided federal money to states to build and refurbish hospitals after World War II, but explicitly sanctioned the construction of segregated facilities:
A hospital will be made available to all persons residing in [its] territorial area … without 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.44
This provision was not ruled unconstitutional until the 1963 case of Simkins v. Moses H. Cone Memorial Hospital, which has been referred to as the “Brown v. Board of Education of health care.”45 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 importance. 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 passage 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 discrimination, 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 ethnicity has received the most attention, the existence of discrimination in health care on the basis of socioeconomic status, disability, age, and gender also raise 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.
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,46,47 two physician-researchers at the Harvard School of Public Health. 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 populations of color and Caucasians. In 2003, the Institute of Medicine (IOM) 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.48 For example, the report concluded that African Americans are relatively less likely to receive treatment for early-stage lung cancer, publicly insured Latinos and African Americans do not receive coronary artery bypass surgery at rates comparable to publicly 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 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.
The key law used to combat race and ethnicity discrimination in health care is Title VI of the 1964 Civil Rights Act,49 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 discrimination under any program or activity receiving federal financial assistance.”50 Because it only attaches to recipients of federal funding, Title VI does not reach, for example, health professionals who do not directly participate 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 law45(pp115–128)). 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 policies that unintentionally have the effect of discriminating against racial and ethnic minorities. This is so because federal regulations implementing the Title VI statute (which explicitly only prohibits 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 several 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 only treated patients covered under Medicaid—this might have the effect of adversely impacting racial and ethnic minorities, 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 participating providers to refuse to accept as patients those individuals covered by Medicaid.
The disproportionate impact regulations are critically important 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,51 these regulations were severely undercut. Under Sandoval, 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 violation of the regulations.h
Physical and Mental Disability Discrimination
Like discrimination based on race or ethnicity, healthcare 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 practice, shipped to mental asylums isolated from communities. Those with physical disabilities were not spared discriminatory practices, either; because individuals with Down syndrome were viewed by medical practitioners as “Mongoloid idiots” and children with cerebral 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 modern healthcare system, in which treatment opportunities 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 Disabilities Act (ADA)52 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 integration in many sectors of society, including employment, public services, public accommodations (i.e., privately owned entities open to the public), telecommunications, 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 program, service, or benefit.
But the ADA’s impact on health care for disabled individuals is notable, in large part because the law defines “places of public accommodation” to include private hospitals and other private healthcare providers. 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. Abbott53 makes clear. This represents an important expansion of federal disability law because prior to the ADA, only recipients of federal funds were proscribed from discriminating on the basis of disability. Note also how this expanded concept 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 limitations. For example, the regulations implementing the ADA’s statutory text only require entities that implement public programs and services to make “reasonable modifications”—but not “fundamental alterations”—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 program or service by a disabled individual amounts to a “reasonable” or “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 reasonable 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 only be made 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 limits attached to certain medical conditions. A stark example of this is found in the case of Doe v. Mutual of Omaha Insurance Company,54 in which a federal appellate court ruled that a lifetime benefit limitation 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 lifetime limit for other conditions.
Socioeconomic Status Discrimination
Compared to race or disability discrimination in healthcare access and treatment, healthcare discrimination based on class gains little attention—even though socioeconomic status is independently associated with health status, and the negative effects of poverty on health and healthcare access are incontrovertible. Class-related healthcare discrimination can take many forms. For example, healthcare providers might refuse to accept as patients individuals who are 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 consumers. (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 scrutiny.55) Another example stems from the fact that healthcare providers (physician and dental practices, hospitals, etc.) 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,56 in which delayed or disparate care could have severe consequences. At least, in theory, gender discrimination in health care could be remedied under the Equal Protection Clause of the federal Constitution; however, Equal Protection 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 healthcare practitioners who receive federal funds cannot face suit under Title VI for even obvious gender discrimination, 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 the elderly. Just one of several disturbing facts on the treatment front is that the elderly sometimes do not receive needed surgical care because health professionals wrongfully assume that the chances of recovery are not good.57 Another concern pertains to insurance coverage, in that many employers are attempting to rescind lifetime health coverage benefits to retired workers, even where the benefits had been promised as part of negotiated labor contracts. 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.
INDIVIDUAL RIGHTS IN A PUBLIC HEALTH CONTEXT
The discussion thus far has focused on healthcare legal rights that individuals can claim in the context of access, receipt of services, freedom of choice, and anti-discrimination. In each of these areas, however, the right claimed is not absolute. For example, 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 only be triggered 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 individual rights and liberties of a different sort: these derive not from the limitations of specific laws, but rather from governmental police powers 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 public health law-related questions as well, including whether the potential for a bioterrorist attack utilizing 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 control 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 facilities face accreditation standards. Food establishments are heavily regulated. Employers are bound by numerous occupational health and safety rules. Businesses are constrained by pollution control measures. Tobacco products can only be marketed in 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 communicable 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.58 This is so because, in a country founded upon the twin ideals of individualism and a limited government, many individuals 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 responsibilities 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 a result, 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; rather, voluntarism is the guiding principle when it comes to personal exercise. Nonetheless, personal coercion and industrial regulation have long been adopted (and accepted) practices of public health officials, and all of the major communicable disease outbreaks have been combated with some combination of compulsory screening, examination, treatment, isolation, and quarantine programs.
The Jacobson v. Massachusetts Decision
The fact that government coercion can be justified by important public health goals does not answer the 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,59 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 at the opening of this chapter.
The facts in Jacobson are straightforward enough. At the turn of the 20th century, the state of Massachusetts 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 Cambridge 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.60,61
Like the enduring private interest/public welfare tension underpinning public health law generally, the Jacobsondecision amounts to “a classic case of reconciling individual interests in bodily integrity with collective interests in health and safety.”60(p577) 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. Responding to Jacobson’s argument that the Massachusetts law impermissibly infringed on his constitutional right to liberty, the court wrote:
The liberty secured by the Constitution of the United States to every person within its jurisdiction does not import an absolute right in each person to be, at all times and in all circumstances, wholly freed from restraint. There are manifold restraints to which every person is necessarily subject for the common good. On any other basis organized society could not exist with safety to its members. Society based on the rule that each one is a law unto himself would soon be confronted with disorder and anarchy.