Who Gets Seen?

Access to health care is often discussed in purely economic terms, but those concerned with ethics should also consider cultural and familial barriers to receiving medical services.

By Noreen C. Facione and Peter A. Facione

More than 38 million Americans have no health insurance, 50 million are uninsured at some time during each year, and 80 million more have insurance that will not cover the cost of a catastrophic illness. Writing in the July 1995 International Journal of Cancer, Lorenzo Tomatis refers to the United States as a country that "spends about 13 percent of its GNP on health in spite of the fact that about 15 percent of its population is not covered by health insurance and has, therefore, no access to a health protection system."

Peter Facione and Noreen Facione

Photo by Charles Barry

Clearly, it is time our nation addressed the ethics of access.

Yet, the issue of access is so broad and fraught with political, legal, economic, technological, medical, and social difficulties that, to be useful, our inquiry requires focus. We have, therefore, limited the topic to one major health-care worry: cancer. The stakes for cancer are particularly high, since access to prevention information, early detection, and optimal treatment are directly related to health and survival.

Barriers to Access
Many people assume cost is the only factor preventing access to cancer services. The American ethos of self-reliant individualism, which can wrongly predispose us to interpret economic success as a sign of moral worthiness, permeates discourse about this issue. Many take as a given that everyone has the capability and the responsibility to attend to his or her own health-care needs. Perhaps that is why the literature on this subject often equates access with ability to pay for services.

Ironically, poverty may mean improved access to some services and no access to others. For example, many publicly funded programs increase access to breast- and cervical-cancer diagnosis for low-income women, which is beneficial — except that often these programs must then struggle with how to obtain treatment for those diagnosed.

Certainly the inability to afford comprehensive coverage is one barrier to access, but the issue cannot be defined solely by economics. Many people who have insurance remain underserved with respect to cancer prevention, detection, and treatment. In 1993, the California Division of the American Cancer Society identified several such groups in addition to the poor: "the elderly...; those who have limited education, literacy, or language ability; persons with disabilities; and those whose cultural beliefs and practices may pose barriers to using Western biomedical techniques."

The Impact of Discrimination
We might add those who are denied services, legally or illegally, because of race, creed, national origin, gender, sexual orientation, or immigration status. In some cases, physician prejudices constrict access, as Warren Ferguson, vice president of medical services at the Family Health and Social Service Center in Worcester, Mass., notes: "Many physicians are uncomfortable interacting with people whose language, culture, sexual orientation, and socioeconomic status are different from their own."

Because doctors in private practice may claim the prerogative of preselecting the patient populations they will serve, diminished access to care for some groups may result, Ferguson asserts.

African Americans may suffer particularly from this barrier. They show disproportionately higher incidence and mortality rates for most cancers, which Karen Davis, executive vice president of the Commonwealth Fund in New York, attributes to "inequities in the distribution of health resources, not genetic or biological factors." Women also encounter special barriers. The social and political status of women in many nations means that adequate access to breast-cancer diagnosis and treatment is extremely rare.

Even if we hypothesize that there has never been an instance of sexism, racism, cultural bias, homophobia, or xenophobia in the health-care system, legal factors can work to deny services. Care providers may, given the pertinent laws, restrict access on the basis of citizenship, immigration status, or HMO membership.

Why Patients Do Not Seek Services
Access has sometimes been trivialized, especially by HMOs that define the problem as lag time between the moment a worried client phones for an appointment and the time the patient actually sees a health-care provider. Worse, some people blame patients for not being smart enough to have known when — or even whether — they should have contacted their physician.

Clients may lack knowledge of the significance of physical symptoms. At least one study suggests that cancer-education materials are inaccessible to nearly one-fifth of the English-speaking population. The vast majority of such materials are written at the 10th- to 11th-grade reading level. But 19.6 percent of the American public has completed only two years of high school and has an average reading proficiency several grade levels lower.

People also may not access the health-care system because of their religious beliefs, the press of family responsibilities, transportation needs, lost pay and other employment issues, or ignorance of how to enter the system.

In addition, culture can be a barrier. Many women do not seek immediate care for a self-discovered breast-cancer symptom because of cultural constraints on the use of family resources or interpersonal relationships that affect their health behavior.

For example, a woman may hesitate to seek advice from a physician about a breast lump because, in her culture, it is inappropriate for anyone other than her husband to see her undressed. She may also feel that becoming the focus of attention - as cancer treatment would force her to do - is not appropriate for a woman, whose role is to serve her husband and children and not consume family financial resources. Finally, she may fear that her husband will leave her if breast-cancer treatment makes her sexually unacceptable to him.

All these barriers restrict access. Some are deeply cultural, not superficially informational.

The Right to Access
Now that we have identified some of the factors that prevent cancer patients from receiving services, we can begin looking at ethical approaches to correcting these problems. A good place to start is with the basic question: What rights to access ought any of us have?

At a minimum, people should have the right to seek cancer treatment services if they can find and afford them — a thin, if not valueless, right indeed for millions when measured against the formidable barriers we have discussed. Beyond this minimum, we would argue that even a less-than-affluent society ought to provide its members with the right to receive screening and useful information about cancer, even if they cannot afford or do not seek these services.

Imagine the risks otherwise. How, for example, should a patient decide whether to treat her breast cancer with a partial mastectomy, a lumpectomy, or a prophylactic double mastectomy if she doesn't understand the words, let alone the benefits and risks involved in each procedure. Attorney Lawrence Gostin worries that, in the absence of the right to accurate and understandable information, those having financial interests in the health-care industry might "manipulate or assure decisions consistent with their own clinical judgment," jeopardizing the patient's ability to give informed consent.

Information is a basic access right, but, in an affluent society such as ours, we believe access should extend further. The United States should also guarantee the right to an adequate level of prevention and treatment services. In answer to the obvious question, How much is adequate? we would reply, "As much as any of us would be reasonable in expecting for ourselves and our families." Why should access not be distributed equally to all as a basic right?

Yet, proposing this right does not answer all the ethical questions posed by access. However much we may advocate a system that provides adequate care for everyone, we live in a world where health-care resources are scarce. So it really comes down to this: What is the most ethical way to distribute what we have among those in need?

Variations on Social Utility
Different ethical imperatives direct our energy and attention toward different answers. And, even within a single ethical orientation, we still find divergent priorities.

Consider social utility, for example, which directs us to consider the greatest good of the greatest number. If we begin by declaring the good we intend to foster is good health, we would focus attention chiefly on those most at risk for developing cancer. This points toward providing cancer screening for the elderly, who have the highest cancer incidence and mortality rates. Perhaps because of poor health insurance coverage and the impossibly high cost of treatment, the elderly are frequently not offered, and do not seek, state-of-the-art cancer services.

But directing most of our resources toward the elderly may be a bit shortsighted; for, if the main good is the nation's future, we should assure access to educational cancer prevention and early detection information for children and young adults. On the other hand, if we give priority to those most at risk of death should cancer occur, our policy would assure access to screening for the poor and for specific ethnic populations like African Americans, since cancer mortality rates are highest in these groups.

If our top concern is lost economic productivity, defined in terms of lost wages due to sick days regardless of the nature of the work performed, our policy would be to assure access to the employed, perhaps with preference for those in higher-paying positions. If, however, our top concern is productivity defined in terms of providing those goods and services society most needs, we might favor those holding socially useful occupations like teaching. Or we might assure access to heads of households and family care givers, whether or not they earn a wage for their work.

Justice Tempers Utility
Given the difficulty of defining which group should take priority, we must bring another ethical principle into play. Justice — the equitable distribution of a society's benefits and burdens among its people — must temper our thinking and guide us as we choose among competing individual human needs and community priorities.

If, as we have argued, everyone has a right to basic cancer services, justice suggests we should direct resources first to those who now lack access to these basics — the poor and those ethnic populations who receive few or no services. We would then begin building equitably from some basic threshold level.

But just as justice tempers utility, so utility grounds justice in practicality. At some point, it could become destructive of society's overall well-being if we were to direct all our resources on everyone equally. We would argue that, once a minimum threshold of access to cancer services such as information and diagnosis is achieved, care givers, the young, the economically productive, and then those at greater risk of death may have greater claims on treatment resources in terms of social utility.

Justice and utility require responsible, intelligent, and fair-minded policies to assure access for our nation's people. Providers, policy makers, and concerned citizens alike share an ethical responsibility to make education, diagnosis, and treatment available to all.

Noreen C. Facione is a research associate in physiological nursing at U.C.-San Francisco School of Nursing and a Markkula Center for Applied Ethics associate. Peter A. Facione is dean of the College of Arts and Sciences at Santa Clara University and a Center scholar.

Further Reading
Freeman, H.P., Muth, B.J., and Kerner, J.F. "Expanding Access to Cancer Screening and Clinical Follow-up Among the Medically Underserved." Cancer Practice 3 (1995): 19Æ30.

Steiner, C.B. "Access to Cancer Prevention, Detection, and Treatment." Cancer 67 (1991): 1736Æ40.

Subcommittee to Evaluate the National Cancer Program, National Cancer Advisory Board. Cancer at a Crossroads: A Report to Congress for the Nation. Bethesda, Md.: National Cancer Institute, 1994.