ACCESS TO HEALTHCARE

The question of access occupies a curious position in the complex ethos of healthcare. On the one hand, it would seem to be the most basic of all ethics issues, for if people do not have access to care, all the other problems that providers and ethicists worry about are more or less moot. If there were no patients, it would be impossible to provide healthcare, at least to human beings.

On the other hand, despite all the rights that have been addressed (and, in some cases, created) by modern bioethics—including, but not limited to, the right to refuse treatment, the right to informed consent, the right to protection as a human subject of research, and the right to die on one's own terms—no right of access to care has been formally established. It is not addressed in the Declaration of Independence. Its only association with the U.S. Constitution is the 1976 Supreme Court ruling in Estelle v. Gamble, which held that deliberate indifference to an inmate's serious illness or injury on the part of prison officials violates the Eighth Amendment prohibition against cruel and unusual punishment.

Access is not addressed in the Nuremberg Code or the Universal Declaration of Human Rights. Even the World Health Organization's (WHO) oft-cited definition of health, set out in the preamble to its constitution (1946), as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity" does not specifically address the issue of access, although the same preamble states that "the extension to all peoples of the benefits of medical, psychological, and related knowledge is essential to the fullest attainment of health."

Perhaps the closest the United States has come to a formal policy statement is the language in the 1983 report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The commission concluded that "society has an ethical obligation to ensure equitable access to healthcare for all" and that "equitable access to care requires that all citizens be able to secure an adequate level of care without excessive burdens" (p. 4). Despite these recommendations, no policy initiatives were undertaken.

Yet, in both charitable tradition and public policy, there is a history of implicit acknowledgement that the sick and injured should be able to obtain the care they need. Most major religions have, to one degree or another, adopted the provision of care as a ministry, usually in the form of hospitals. Most developed nations (and some others) have formally committed themselves to access to care for most or all of their residents. Public funds support hospitals, nursing homes, clinics, and other sources of care, and in some nations (the United States and Australia being prominent examples), these funds are also used to subsidize insurance coverage, which is usually public but sometimes private.

In the United States, federal law requires that any person seeking care in a hospital emergency department must receive an examination and evaluation, and if the person is at grave risk of death or severe debility, or is a pregnant woman in labor, the hospital may not transfer that patient unless it is clinically necessary. Many states have similar laws. There are also civil penalties for providers who are perceived to have refused care if the need was dire (and sometimes, even if it was not). Furthermore, public opinion surveys conducted by a wide range of opinion research organizations have found that most Americans support universal access to needed care, even if definitions of what that means vary considerably.

In the twentieth century, the United States also passed laws providing public funding for many healthcare services for people sixty-five or older (Medicare); for some of the poor, including some pregnant women and young children and the disabled (Medicaid); and for other low-income children (State Children's Health Insurance Program). Many states have also enacted programs subsidizing the care of low-income individuals.

Philosophy Versus Practice

Despite both rhetoric and law, access to care is hardly universal in the United States. To be fair, access to care is undoubtedly compromised, to one degree or another, in every nation on earth, because of lack of facilities, difficult terrain, poor transportation, poverty, weather, and other factors. The United States is no exception.

However, at least three factors make the United States unique with regard to access. First, unlike those of other developed nations, its federal government has never made a political commitment to universal access. Second, the key to access, generally speaking, is insurance coverage—and with few exceptions, the provision and acquisition of insurance is voluntary on the part of employers and individuals. Third, there is no political or societal consensus that access to care should be a right.

The most obvious evidence of resultant access problems is that a significant portion of the population lacks coverage. As of 2001 (the last year for which complete data were available), 16 percent of non-elderly Americans were uninsured; that represents 40.9 million people (U.S. Bureau of the Census, 2002b). Among them were 8.5 million children younger than eighteen and 272,000 people over sixty-five. Furthermore, members of minority groups were far more likely to lack coverage: Although 13.6 percent of whites were uninsured, 19 percent of African Americans and 33.2 percent of Latinos were uninsured (U.S. Bureau of the Census, 2002a).

There were also significant variations in the rate of lack of coverage among states, ranging from 23.5 percent in Texas and 20.7 percent in New Mexico to 7.5 percent in Iowa and 7.7 percent in Rhode Island and Wisconsin (U.S. Bureau of the Census, 2002c).

It is often argued that coverage is not equivalent to care, and that although it might be less convenient and will likely consume more time, the uninsured are usually able to obtain care when they need it. Some proponents of this position cite the system of public hospitals, operated by counties and cities and occasionally by states and even the federal government; the legal obligation of non-public hospitals to treat the seriously ill and injured; and hundreds (if not thousands) of subsidized clinics, public and private. Millions of people receive care through these avenues every year.

However, the network of public hospitals has contracted in recent years, and often those that remain are severely stressed financially, leading to long waiting times and delays in preventive and nonemergency care. Voluntary and for-profit hospitals vary significantly in terms of how much free care they can and do provide, and many limit what they do beyond the requirements of law. And although clinics often provide excellent and timely primary care, they are unable to offer the technology and specialty care that are available in hospitals.

Seeking to explore the validity of the argument that coverage does not determine access, in 1999 the Institute of Medicine of the National Academy of Sciences undertook a study of the interrelationship of coverage, access, and health status; the results were released in May 2002. The report estimated that 18,000 or more people die prematurely each year because of lack of coverage and a resultant lack of care.

The report concluded, "As a society, we have tolerated substantial populations of uninsured persons as a residual of employment-based and public coverage since the introduction of Medicare and Medicaid more than three and a half decades ago. Regardless of whether this is by design or default, the consequences of our policy choices are becoming more apparent and cannot be ignored" (Institute of Medicine, p. 15–16). But the United States has demonstrated on many occasions that for the most part, it can and will ignore them, at least as a matter of policy. Indeed, even when there was widespread awareness of the coverage crisis on the part of policy makers in the late 1990s, as well as a federal budget surplus, they focused most of their efforts on improving access to care for members of health maintenance organizations—who were already insured.

The Ethics Issues

Policy decisions (or the lack thereof) do not occur in a vacuum; there are always guiding philosophies at work. And with regard to access, the philosophical and ethical issues are exceedingly complex. They include:

• Is there a right of access to care?
• To what should a person have access?
• Should there be a standard of merit or deservedness?
• Are two or more tiers of care acceptable?
• If there must be denial or harm, to whom should it apply?

RIGHT OF ACCESS. Virtually all of the rights that patients and families have been able to claim, at least in the early twenty-first century, are individual in nature and involve the protection and honoring of a single person's (or a single family's) decisions. The idea of a right of access to care involves a great deal more than that. In order for such a right to be acknowledged, it must be agreed to by patients, the general public, providers, and whoever will pay for the care that is provided. Furthermore, at least in healthcare, there do not appear to be many endemic, universally supported rights that have consequences as profound as those that a right to healthcare would entail. The sudden enfranchisement of more than 40 million people would have profound consequences for the healthcare system as a whole—and for the society as a whole, if public money were to fund that enfranchisement, as it likely would.

It is impossible to state unequivocally that rights exist unless they are acknowledged to exist and are honored in practice. Americans may have a right to "life, liberty, and the pursuit of happiness," but unless conditions are created that allow these rights to be real, they are only abstractions. Even a general religious and moral consensus that people should be able to obtain the care they need does not constitute a right, if that access is not present in fact. Thus, as a practical matter, there is little evidence that a general right of access to care exists. What can be stated is that a person at grave risk of immediate or imminent death, or a woman who is in the process of giving birth, has a right of access to care, because both a general consensus and the presence of law and penalties make it so. No overall right of access exists except as a moral desirability; if access is granted, it is largely a voluntary act.

TO WHAT SHOULD A PERSON HAVE ACCESS? The general abstraction of a right of access becomes more real when the question is what a person should have access to. The ethical standard here is usually thought to be necessity—that is, a person should be able to obtain the care that he or she needs. As for what constitutes necessity, there are certain broad agreements: Purely cosmetic surgery is hardly ever necessary, whereas treatment for a serious bullet wound is almost always necessary.

At that point, however, any further consensus evaporates, because the standard becomes almost totally subjective. Many services, from breast reduction (or enlargement) to chiropractic to acupuncture to preventive colonoscopy, are seen as necessary for one and as frills for another. Those who provide these services believe (or at least profess to believe) that they are necessary for good health; those who seek them believe the same. Those who pay for them (if they are not the patients) and those who do not seek them have a different opinion. The difficulties that the state of Oregon encountered when it sought (successfully) to reduce the scope of services covered by its Medicaid program attest to this.

Yet it is possible that an ethically acceptable consensus could be achieved in terms of what a person should have access to, if it fulfilled four requirements: First, that it would satisfy most people, which is necessary in a democracy; second, that those services deemed necessary were seen to be so by objective experts; third, that the people who were most likely to be affected were part of the decision making process; and fourth, that some form of exception was provided for in unusual cases (for example, even if organ transplants were limited to one for any patient, retransplantation might be allowed if the donor organ proved unusable or the operation had been bungled and if there were a reasonable possibility of success). The obstacles to such a consensus are largely financial and political in nature, and not ethical.

SHOULD THERE BE A STANDARD OF MERIT OR DESERVEDNESS? One of the most widespread means of allocating resources is on the basis of merit, one of six principles of social justice often used in healthcare (Fox, Swazey, and Cameron, 1984). This meritarian principle has been used in situations as widely varied as allocation of kidney dialysis machines when they were scarce to determination of eligibility for Medicaid to pricing of health insurance. It has been argued that access to care should be governed by the same principle, that is, those who do not work for a living by choice, or who practice poor health habits, or who live socially irresponsible lives, should not have access to care, or at least not the same access that more deserving individuals merit. Certainly this principle has been applied elsewhere in U.S. social policy and practice, notably in what is colloquially known as the welfare system.

The problem here is threefold. First, if the goal being pursued is universal access to some level of care, then the core of that goal is universality. Determining the eligibility for access of individuals on the basis of any criteria, no matter how persuasive, negates the primary principle. However repugnant some individuals are to society—convicted mass murderers (who, as mentioned earlier, have a legal right of access, however spottily honored), child molesters, terrorists, obese fast-food addicts, smokers—their inclusion is necessary if there is to be universality. On the other hand, if the system is allowed to be selective on the basis of meritarian criteria, history suggests that it is quite likely that the same people excluded under the old system would be excluded under the new, and that many of them would probably be poor, powerless, and nonwhite.

Second, what constitutes merit? In public policy debates, much is made of tax monies being used to subsidize those who are undeserving because they do not work. Yet leaving the work force in order to raise a child is considered perfectly acceptable if the family has the financial means. The association of racial and ethnic minorities with welfare (and because the two programs were tied until recently, with Medicaid) led to a widespread stereotypic belief that nonwhites were less deserving of public largesse. In general, society condemns obesity, use of tobacco products, overuse of alcohol, use of illegal drugs, and lack of exercise. Yet exercise-induced injuries, stress from overwork, misuse of prescription drugs, and anorexia are all excused, and insurance will usually pay for treatment.

It is extremely difficult to establish an ethical standard that will be generally accepted when the criteria appear to be random, or, worse yet, when the criteria appear to follow a pattern of racial, gender, age, or income discrimination. Nonetheless, these patterns are evident in the making of other social policy, and thus can be expected in healthcare.

Third, because access to care appears to have a direct effect on longevity, the denial of care based on a person's current character and behavior may effectively deny the possibility of redemption, a concept that is important in most ethical thought. Were society to deny access to care on the basis of irresponsible behavior, millions of young people under the age of thirty would likely be barred. Were society to deny access to care on the basis of poor health habits, many people who changed their behaviors after a health scare would never have the opportunity to do so. And, however unfortunate it is that the criterion is used, there are those who were born into poverty who went on to become successful, who might not have lived long enough to change their lives if they had not had access (if they did). A standard that denies the possibility of redemption seems exceedingly harsh.

ARE TWO OR MORE TIERS OF CARE ACCEPTABLE? Part of the debate over access, and to what one should have access, is the question of whether one standard of care should be applied to all patients, or whether tiers of care should be allowed, largely determined on the basis of either income and location.

For example, should someone living in a remote part of Alaska expect the same access as someone living a block away from a renowned teaching hospital? More germane is the question of whether a person of significant means should be able to buy coverage or services that are not fiscally available to most others, or, conversely, whether someone who is unable to pay for coverage or care should receive the same services that others must pay for, directly or indirectly.

There are both philosophical and practical responses. The philosophical responses are sharply divided. On the one hand, those who believe that healthcare is a public common that belongs to everyone would argue that one standard must apply to all, in order to preserve both quality of care and equality of opportunity. As former U.S. Surgeon General David Satcher said in 1999, "Bioethical principles call for one standard of health for all Americans" (Friedman, p.5). Indeed, the nation of Canada has gone to great lengths, in policy and practice, to ensure such a standard by refusing to allow private insurance to cover any service that is also covered by the national health program.

On the other hand, in a market-capital society such as the United States, having more money usually means that one can buy more or better—a larger house, a fancier car, gourmet food. That is part of the reason wealth is sought after. Why should this principle not extend to healthcare? If one wishes to purchase more lavish insurance, or more personal healthcare attention, or services that are not available to lower-income people, why should that be denied?

Both arguments have merit. Perhaps a middle ground can be found in a compromise and a reality. The compromise is that tiers of care may be allowed to exist as long as the bottom tier offers acceptable access, quality and outcomes—a criterion that the U.S. healthcare system has so far failed to meet. The reality is that tiers of care exist in every healthcare system on earth, including those of Canada and the United Kingdom, because of the existence of a private sector willing to fulfill the demands of those willing to pay more, and because of the existence of national and international air transportation.

The purest ethical standard would demand absolute equality of access, of opportunity, and of care. Yet no nation on earth has been able to achieve this. That is not to say that this standard should be abandoned, but rather that the measure should be how close a society comes to meeting that standard, and what the consequences are when it does not. Lack of access to frill healthcare services may not be harmful, clinically or ethically, especially in light of the dangers posed by hospital-induced infections, insufficient nurse staffing, and substandard care. Lack of access to desperately needed care, based on ability to pay, is not ethically acceptable. The problems, as is usual in ethics, lie in the gray area between these two extremes.

"Two tiers of healthcare services will by right exist: those provided as part of the minimal social guarantee to all and those provided in addition through the funds of those with an advantage in the social lottery who are interested in investing those resources in healthcare," argues H. Tristram Engelhardt (Engelhart, p. 69). Others would disagree, arguing that wealth should not be able to buy health when it is denied to others. But whether they exist by right, by policy, or by accident, tiers exist, and the ethical imperative is to protect those at the bottom, rather than engaging in a fruitless effort to constrain those at the top.

IF THERE MUST BE DENIAL OR HARM, TO WHOM SHOULD IT APPLY? With respect to this question, it is instructive to consider who is harmed or denied under the system in the early twenty-first century: the uninsured, especially the uninsured poor; patients with certain diagnoses such as AIDS; racial and ethnic minorities; the chronically ill; and, in some cases, the dying (whether in this case the harm comes from overtreatment or undertreatment). Traditionally in U.S. society, those with less power and money are more vulnerable, because being poor, powerless, or politically irrelevant is equivalent to failure, and, as Roger Evans has written, "While the lives of the uninsured are clearly worth less than those of the insured, their plight reflects the unwillingness of our sociopolitical system to reward failure" (Evans, p. 17). The question is whether such failure should be punished by denial of access to care.

There is a reason that so many other societies have made a commitment to universal access to care, no matter how imperfect their efforts to implement it. That commitment is rooted in a communitarian ideal, an ethics precept that states that everyone is involved in what is happening and everyone is equally vulnerable to the consequences. This is not based only on theoretical ideals—however appealing they might be—but also on practicality: If only some individuals are protected, then some individuals are at more risk than others, although one's level of risk can change very quickly indeed. If all are protected, either none are at risk, or else all are. The strength of purpose that such an arrangement engenders leads to a stronger commitment to access, because it affects everyone. As the late Joseph Cardinal Bernadin wrote, "It is best to situate the need for healthcare reform in the context of the common good—that combination of spiritual, temporal, and material conditions needed if each person is to have the opportunity for full human development" (Bernadin, p. 65).

Conclusion

As an ethics issue, access to care will continue to be challenging, not so much on its merits as in the inability of the United States to act on the challenge. Norman Daniels has written, "If the glaring inequalities in access in the United States are justifiable, it must be because acceptable general moral principles provide justification for them" (p. 4). No such principles provide that justification, at least when it comes to denial of all but the most critically needed care, which is often halfheartedly provided. Thus there is no moral or ethical justification for the continued denial of access to care, whether intended or not. In the absence of any ethical defense of this ongoing denial, the explanation must be found in a lack of political and social will—and in the failure to find a workable communitarian ideal in a highly individualistic society.

emily friedman

SEE ALSO: Healthcare Systems; Health Insurance; HealthPolicy in the United States; Hospital, Modern History of; Human Rights; Immigration, Ethical and Health Issues of; International Health; Justice; Medicaid; Medicare

BIBLIOGRAPHY

Bernadin, Joseph Cardinal. 1999. Celebrating the Ministry of Healing: Joseph Cardinal Bernadin's Reflections on Healthcare. St. Louis, MO: Catholic Health Association of the United States.

Daniels, Norman. 1985. Just Health Care. Cambridge, Eng.: Cambridge University Press.

Engelhardt, H. Tristram, Jr. 1984. "Shattuck Lecture—Allocating Scarce Medical Resources and the Availability of Organ Transplantation: Some Moral Presuppositions." New England Journal of Medicine 311(1): 66–71.

Evans, Roger W. 1992. "Rationale for Rationing." Health Management Quarterly 14(2): 14–17.

Estelle v. Gamble, 429 U.S. 97 (1976).

Fox, Renée C.; Swazey, Judith P.; and Cameron, Elizabeth M. 1984. "Social and Ethical Problems in the Treatment of End-Stage Renal Disease Patients." In: Controversies in Nephrology and Hypertension, ed. Robert G. Narins. New York: Churchill Livingstone.

Friedman, Emily. 2002. "Separate and Unequal." Health Forum Journal 45(5): 5.

Institute of Medicine. 2002. Care without Coverage: Too Little, Too Late. Washington, D.C.: National Academy Press.

Institute of Medicine. 2002. Coverage Matters: Insurance and Health Care. Washington, D.C.: National Academy Press.

President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Securing Access to Health Care: The Ethical Implications of Differences in the Availability of Health Services, vol. I. Washington, D.C.: Author.

World Health Organization Constitution, Preamble. 1946.

INTERNET RESOURCES

U.S. Bureau of the Census. 2002a. "Health Insurance Coverage: 2001, Table 1: People Without Health Insurance for the Entire Year by Selected Characteristics, 2000 and 2001." Available from <http://www.census.gov/prod/2002pubs/p60–220.pdf>.

U.S. Bureau of the Census. 2002b. "Current Population Survey, March Supplement, Table H101: Health Insurance Coverage Status and Type of Coverage by Selected Characteristics, 2001." Available from <http://ferret.bls.census.gov/macro/032002/health/h01_000.htm>.

U.S. Bureau of the Census. 2002c. "Current Population Survey, March Supplement, Table H106: Health Insurance Coverage Status by State for All People: 2001." Available from <http://ferret.bls.census.gov/macro/032002/health/h06_000.htm>.