The American Journal of Managed Care September 2004 - Special Issue
Distributive Justice in American Healthcare: Institutions, Power, and the Equitable Care of Patients
The authors argue that the American healthcare system has developed in a fashion that permits and may support ongoing, widespread inequities based on poverty, race, gender, and ethnicity. Institutional structures also contribute to this problem. Analysis is based on (1) discussions of a group of experts convened by the Office of Minority Health, US Department of Health and Human Services at a conference to address healthcare disparities; and (2) review of documentation and scientific literature focused on health, health-related news, language, healthcare financing, and the law. Institutional factors contributing to inequity include the cost and financing of American healthcare, healthcare insurance principles such as mutual aid versus actuarial fairness, and institutional power. Additional causes for inequity are bias in decision making by healthcare practitioners, clinical training environments linked to abuse of patients and coworkers, healthcare provider ethnicity, and politics. Recommendations include establishment of core attributes of trust, relationship and advocacy in health systems; universal healthcare; and insurance systems based on mutual aid. In addition, monitoring of equity in health services and the development of a set of ethical principles to guide systems change and rule setting would provide a foundation for distributive justice in healthcare. Additionally, training centers should model the behaviors they seek to foster and be accountable to the communities they serve.
(Am J Manag Care. 2004;10:SP45-SP53)
Take my state, Colorado. Almost every hospital has an ethics committee, but no one asks ethical questions about the entire system. Over 50% of our hospital beds are empty, we have 21 hospitals doing open-heart surgery, and 3 doing transplants (3 times what is needed). We have (for 3.5 million people) more MRI machines than Canada, and far too many specialists. This, in a state in which 450 000 citizens are uninsured and another 400 000 underinsured. We have large excess capacity in neonatology, yet 21% of our women give birth without adequate prenatal care. Excess capacity sits cheek by jowl with great need.
Richard Lamm, 19941
In February 2000, the Office of Minority Health (OMH) of the US Department of Health and Human Services convened a meeting entitled "Conference on Diversity and Communication in Health Care: Addressing Race/Ethnicity, Language, and Social Class in Health Care Disparities." The Office of Minority Health was responding, in part, to public and professional reactions to a paper by Schulman et al.2,3 Schulman et al reported evidence of race and gender bias on the part of participants in a study of decision making by physicians trained in internal medicine and family practice. This article builds on the discussion of a group of experts convened at the conference to explore institutional aspects of the problem.
If provider bias plays a role in healthcare disparities, do healthcare systems independently contribute to inequities in care, and if so, how? By analyzing the performance and organization of selected parts of the healthcare system, we hope to address these questions. This paper's premise is that the institutional structures supporting the American healthcare system have developed in a fashion that permits, and may in fact support, ongoing, widespread inequities based on poverty, race, gender, and ethnicity.
Inequities in Healthcare
Race prejudice is a shadow over all of us, and the shadow is darkest over those who feel it least….
Pearl Buck, 19414
Since the OMH meeting on disparities, racial and ethnic inequities in US healthcare have been documented, notably by William Byrd and Linda Clayton, who published a 2-volume medical history of African Americans in the United States5; the Institute of Medicine, which published a major report titled Unequal Treatment6; and the Urban Indian Health Institute, which reported on health disparities.7 These works complement earlier important studies: a 2-volume report by The US Commission on Civil Rights,8 the Morehouse Medical Treatment and Effectiveness Center's summary of 180 reports published between 1985 and 1999,9 and David Barton Smith's Healthcare Divided.10
Kahn et al, looking at the frequency of services provided to Medicare patients (eg, X-rays, common diagnostic tests, referrals, and intensive-care-unit stays), documented the lower allocation of diagnostic and therapeutic resources to the poor and to African Americans.11 The work reaffirmed findings of earlier authors.12 Healthcare delivery disparities are documented for diverse conditions, including asthma,13-15 infant mortality,16-18 infectious diseases,19 depression,20 and long-term care.10,21 There are reported differences in total hip and knee replacement,22 renal transplantation,23-25 and bone marrow transplantation.26 African Americans receive lower levels of high-technology testing during cardiac care27-30 and subsequently undergo fewer cardiac bypass or other revascularization procedures.31-33
A review of these papers reveals a variety of hypotheses for the disparities they document: from poverty, lack of access, provider bias, biological differences such as HLA typing, donor availability, and community needs, to patient preferences, unspecified cultural differences, lack of trust, levels of education, and so on. With limited exceptions suggesting provider bias on the one hand,33 and patient preferences on the other,34 the methodologies used in these studies do not allow the authors to explore provider-patient relations in a fashion that would provide clear answers. If racism is involved, it is unlikely to be overt or even conscious.35
Researchers have controlled for sex, age, severity of disease, insurance status, access issues, poverty, and comorbidities. Studies done by the Veterans Administration30,36 and in Canada37 have been sited in an attempt to minimize the effects of differential access and insurance. Most striking is the consistency with which disparities related to race, access, and poverty have been documented. Care is needed in future research,38-42 and studies must better account for "the social, economic, and political forces that constrain the lives of those studied."38
Although the patient's voice generally is missing from work done to date, there are exceptions. Recent studies suggest African American patients were more likely to refuse cardiac surgery,36 carotid angiography and carotid endarterectomy,43 and knee replacement.34 These findings suggest that future research needs to include both provider and patient views and to incorporate a broader range of related issues. Lack of trust and perceived racism may be among the issues playing a role in healthcare inequities.44
Institutional Factors Contributing to Healthcare Inequities
The most basic and irrefutable lesson of the story of healthcare's civil rights struggle is that the problem is much more institutional than individual.
D. B. Smith, 200010
Financing and power are core sources of exclusionary institutional practices in healthcare. This section will deal with 4 selected aspects of exclusionary healthcare practices: comparative costs, health insurance, financing/risk reduction, and the relationship between power and rule setting.
THE COST OF AMERICAN HEALTHCARE. WHAT'S THE RETURN? WHO'S PAYING?
Canadians, Australians and Western Europeans spend about half what we do on healthcare, enjoy universal coverage, and are healthier.
S. Woolhandler and D. Himmelstein, 200245
Per capita, the United States has the most expensive healthcare system in the world. In 2000, the US spent $4631 per capita or 13% of its gross domestic product (GDP) on health. Physicians in the United States are paid higher wages than their counterparts internationally, and the average hospital cost of $1128 per day ranks highest (by wide margins) among the 29 member nations of the Organization for Economic Cooperation and Development (OECD). Denmark is second at $632 per day, and Canada ranks third at $489.46 Researchers estimate that "Americans paid 40 percent more per capita than Germans did but received 15% fewer real healthcare resources."47 Estimates place health expenditures at 15.5% of America's GDP in 2004 and 18.4% in 2013.48 In addition, "much of the energy and capital spent in the development of new healthcare products and services have been targeted at the high end–at sustaining technologies that enable the most skilled practitioners to solve problems that could not be solved before."49
Comparative international rankings place the United States in the lower one half of health outcomes measures. For example, the high US infant mortality rate is 6th from the bottom of the 29 OECD countries with only Turkey, Mexico, Poland, Hungary, and Korea having higher infant mortality rates in 1996.50 The United States had the highest diabetes mortality,51 and ranked 12th (second from the bottom) of 13 countries for 16 available health indicators.52 More than 43 million Americans lack health coverage; and of the 29 OECD countries, only the United States, Mexico, and Turkey lack universal health coverage.50
For years, Americans have equated healthcare coverage with employee benefits. Estimates of health insurance coverage have not distinguished between coverage provided by federal and state agencies and that provided by the private sector. Broad references to "private" coverage thus masked a large portion of publicly funded healthcare. Current estimates of healthcare financing are that tax dollars support 59.8% of American healthcare. This figure includes persons who rely on tax-funded government insurance such as Medicare, Medicaid, former or current military coverage, Indian Health Service, and tax-funded coverage for government employees such as FBI workers.45 In a second recent study, private-sector workers whose employers arranged their insurance accounted for only 43% of the total.53
HEALTHCARE INSURANCE AND POLITICS
There are some questions that historians return to so often that they become classics in the field. . . . No inquiry better qualifies for this designation than the question of why the United States has never enacted a national health insurance program.
D. J. Rothman, 199354
The primary source of rationing and inequities in American healthcare is the political system. To date, Congress has resisted enactment of universal healthcare coverage and has instead relied on a patchwork of "safety nets," many of which are imperiled. Since being established in 1967, Community and Migrant Health Centers have served as a primary care safety net for medically vulnerable populations.55 A more recent safety net program is the State Children's Health Insurance Program (SCHIP) established by the 1997 Balanced Budget Act. Cited for successful enrollment of previously uninsured minority children,56 studies of SCHIP document the need to "initiate programmatic efforts to ensure that the disparities children experience before enrollment are not perpetuated."57
Writing in 1996, Krieger commented that "Congress is awash with legislation intended to cut back, if not end, many programs that have improved public health and reduced social disparities in health, such as Aid to Families and Dependent Children (AFDC), Head Start, Medicaid and Medicare, unemployment benefits, regulatory powers of the Environmental Protection Agency and the Occupational Safety and Health Administration. Much of the rhetoric around these political changes is couched in racially coded language that suggests the working poor and unemployed are solely responsible for their plight."58 True to Krieger's observations, new economic downturns and state budgetary changes have led to threats to both Medicaid and SCHIP coverage for children.59,60