The following statement is from a member of a focus group of adults, aged 19 through 54, with sickle cell disease. The focus group was conducted as part of the Race and Pain Treatment Project, which includes a qualitative study of the pain treatment experiences of adults with sickle cell disease. Sickle cell disease is an inherited blood disorder and is characterized by excruciating musculoskeletal pain that punctuates the lives of patients with the disease. Often referred to as “crises,” these episodes of pain are the principal causes of morbidity among patients with the disease. See Platt, O.S. et al., “Pain in Sickle Cell Disease,” N. Engl. J. Med., 325 (1991): 11–16. The voices of individuals whose lives are intertwined with pain episodes provide an important personal context to the data of race and pain treatment studies. They also should also serve as a plea — a demand — for further study of the inequities resulting from the differences in pain treatment based on race and ethnicity.Google Scholar

Johnson, S.H., “Introduction: Legal and Regulatory Issues in Pain Management,” Journal of Law, Medicine & Ethics, 26 (1998): At 265–66.Google Scholar

Bach, P.B. et al., “Racial Differences in the Treatment of Early-Stage Lung Cancer,” N. Engl. J. Med., 341 (1999): 1198–205.Google Scholar

Wenneker, J.B. et al., “Racial Inequalities in the Use of Procedures for Patients with Ischemic Heart Disease in Massachusetts, JAMA, 261 (1989): 253–57.Google Scholar

Carlisle, D.M. et al., “Racial and Ethnic Differences in the Use of Invasive Cardiac Procedures among Cardiac Patients in Los Angeles County,” American Journal of Public Health, 85 (1995): 352–56; Johnson, P.A. et al., “Effect of Race on the Presentation and Management of Patients with Acute Chest Pain,” Annals Internal Medicine, 18 (1993): 593–601.Google Scholar

Alexander, G.C. et al., “Barriers to Cadaveric Renal Transplantation among Black, Women, and the Poor,” JAMA, 280 (1998): 1148–52.Google Scholar

Gornick, M.E., “Effects of Race and Income on Mortality and Use of Services Among Medicare Beneficiaries,” N. Engl. J. Med., 335 (1996): 791–99; Kahn, K.L., “Health Care for Black and Poor Hospitalized Medicare Patients,” JAMA, 271 (1994): 1169–74.Google Scholar

Whittle, J. et al., “Racial Differences in the Use of Invasive Cardiovascular Procedures in the Department of Veterans Affairs Medical System,” N. Engl. J. Med., 329 (1993): 621–27; Peterson, E.D. et al., “Racial Variation Cardiac Procedure Use and Survival Following Acute Myocardial Infarction in the Department of Veterans Affairs,” JAMA, 271 (1994): 1175–80.Google Scholar

Smith, D.B., Health Care Divided, (Ann Arbor, Michigan: University of Michigan Press, 1999): At 312–19. According to Smith, in spite of the federal efforts to end segregation, health care remains, at best, more than half the distance between a fully segregated and integrated system.Google Scholar

Mayberry, R.M. et al., Racial and Ethnic Differences in Access to Medical Care: A Synthesis of the Literature (Menlo Park, California: Henry J. Kaiser Family Foundation, 1999).Google Scholar

Wenger, A.F., “Cultural Meaning of Symptoms,” Holistic Nurse Practice, 7 (1993): 22–35.Google Scholar

Zborowski pioneered research in the 1950s on ethnic differences in pain response. See Zborowski, M., “Cultural Components in Response to Pain,” Journal of Social Issues, 8 (1952): 16–30; Bates, M.S., “Ethnicity and Pain: A Biocultural Model,” Social Science & Medicine, 24 (1987): 47–50; Bates, M.S. et al., “Ethnocultural Influence on Variation in Chronic Pain Perception,” Pain, 52 (1993): 101–12; Bates, M.S., “The Effect of the Cultural Context of Health Care on Treatment of and Response to Chronic Pain and Illness,” Social Science & Medicine, 45 (1997): 1433–47; Bates, M.S., “A Cross-Cultural Comparison of Adaptation to Chronic Pain among Anglo-Americans and Native Puerto Ricans,” Medical Anthropology, 16 (1995): 141–73; Greenwald, H.P., “Interethnic Differences in Pain Perception, Pain, 44 (1991): 157–63.Google Scholar

Zborowski, M., People in Pain (San Francisco: Jossey-Bass, 1969).Google Scholar

Encandela, J.A., “Social Science and the Study of Pain Since Zborowski: A Need for A New Agenda,” Social Science & Medicine, 36, no. 6 (1993):783–91.Google Scholar

The research of differences in cultural presentation of pain supported by this literature has many limitations. Language and communication barriers and researcher bias are significant limitations to much of this work. Howard Greenwald's commentary about Zborowski's and other studies observing differences in pain associated with race and ethnicity concluded that: “These and related studies leave much uncertainty about the relation between ethnicity and pain today. The variety of methods used to assess expression of pain makes comparison of research findings difficult. Most studies do not control for social background variables other than ethnicity that may affect perceptions or interpretation of pain.” See Greenwald, , supra note 12, at 157.Google Scholar

For a review of the literature on cultural differences in response to laboratory-induced pain, see Zatzick, D.F. and Dimsdale, J.E., “Cultural Variations in Response to Painful Stimuli,” Psychosomatic Medicine, 52 (1990): 544–57; Edwards, R.R. and Fillingim, R.B., “Ethnic Differences in Thermal Pain Responses,” Psychosomatic Medicine, 61 (1999): 346–54; Sheffield, D. et al., “Comparison of Perception of Angina Pectoris During Exercise Testing in African Americans Versus Caucasians,” The American Journal of Cardiology, 83 (1999): 107–08.Google Scholar

Todd, K.H., “Pain Assessment and Ethnicity,” Annals of Emergency Medicine, 27 (1996): 421–32.Google Scholar

MEDLINE is the National Library of Medicine's premier bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the health-care system, and the pre-clinical sciences. The MEDLINE file contains bibliographic citations and author abstracts from approximately 3,900 current biomedical journals published in the United States.Google Scholar

HealthSTAR contains citations to journal articles, monographs, technical reports, meeting abstracts and papers, book chapters, government documents, and newspaper articles from 1975 to the present. HealthSTAR focuses on the non-clinical (emphasizing health-care administration, economics, planning, and policy) and the clinical (emphasizing the evaluation of patient outcomes and the effectiveness of procedures, programs, products, services, and processes) aspects of health-care delivery.Google Scholar

A study not included in MEDLINE and HealthSTAR that should be referenced is a 1996 study of black and female emergency department patients complaining of chest pain. See Barrow, C.L. and Easley, K.A., “The Role of Gender and Race on the Time Delay for Emergency Department Patients Complaining of Chest Pain to be Evaluated by a Physician,” Saint Louis University Public Law Review, 12 (1996): 267–77.Google Scholar

See Adult Sickle Cell Disease Focus Group Voices, supra note 1.Google Scholar

Todd, K.H. et al., “Ethnicity as a Risk Factor for Inadequate Emergency Department Analgesia,” JAMA, 269, no. 12 (1993): 1537–39.Google Scholar

Id. at 1538.Google Scholar

Id. at 1539.Google Scholar

Id. at 1537.Google Scholar

Todd, K.H. et al., “The Effect of Ethnicity on Physician Estimates of Pain Severity in Patients with Isolated Extremity Trauma,” JAMA, 271, no. 12 (1994): 925–28.Google Scholar

See Todd, , supra note 22.Google Scholar

See Todd, , supra note 26, at 926. A total of 207 patients participated in the study (138 Non-Hispanic white and 69 Hispanic non-white). Sixty-five different physicians evaluated the patients. There was no difference between white and Hispanic patients with regard to patient pain assessment, which was higher than the physicians' pain assessment for both groups.Google Scholar

Id. at 926.Google Scholar

Id. at 927.Google Scholar

Id. at 927–28.Google Scholar

See Todd, , supra note 22.Google Scholar

Karpman, R.R. et al. “Analgesia for Emergency Centers' Orthopaedic Patients: Does an Ethnic Bias Exist?,” Clinical Orthopaedics and Related Research, 334 (1997): 270–75.Google Scholar

Id. at 275.Google Scholar

Id. at 274.Google Scholar

See Todd, , supra note 22.Google Scholar

See Karpman, , supra note 33.Google Scholar

Id. at 275.Google Scholar

See Todd, , supra note 22.Google Scholar

See Karpman, , supra note 35.Google Scholar

Todd, K.H. et al., “Ethnicity and Analgesic Practice,” Annals of Emergency Medicine, 35 (2000): 11–16.Google Scholar

See Todd, , supra note 22.Google Scholar

See Todd, , supra note 41.Google Scholar

Id. at 11.Google Scholar

Id. at 14–15.Google Scholar

Cleeland, C.S. et al., “Pain and Its Treatment in Outpatients with Metastatic Cancer,” N. Engl. J. Med., 330 (1994): 592–96, at 595.Google Scholar

Id. at 59.Google Scholar

Cleeland, C. et al., “Pain and Treatment of Pain in Minority Patients with Cancer,” Annals of Internal Medicine, 127 (1997): 813–16.Google Scholar

Id. at 813.Google Scholar

Id. at 814 (“The Pain Management Index is based on guidelines form the World Health Organization and the Agency for Healthcare and Quality.”).Google Scholar

Id. at 814.Google Scholar

See Cleeland, et al., supra note 46.Google Scholar

See Cleeland, et al., supra note 48, at 815.Google Scholar

Id. at 815.Google Scholar

Bernabei, R. et al. “Management of Pain in Elderly Patients With Cancer,” JAMA, 279, no. 23 (1998): 1877–82.Google Scholar

Id. at 1878. “SAGE” is a population-based multilinked database that includes computerized data collected as part of the Health Care Financing Administration's Multistate Nursing Home Case-Mix and Quality Demonstration Project.Google Scholar

Id. at 1879.Google Scholar

Id. at 1880.Google Scholar

Id. at 1881.Google Scholar

Kahn, K.L. et al., “Health Care for Black and Poor Hospitalized Medicare Patients,” JAMA, 271 (1994): 1169–74.Google Scholar

42 U.S.C. § 2000d (1999).Google Scholar

United States v. Baylor University Medical Center, 736 F.2d 1039, 1500 (5th Cir. 1984).Google Scholar

Watson, S.D., “Minority Access and Health Reform: A Civil Rights to Health Care,” Journal of Law, Medicine & Ethics, 22 (1994): 127–37, at 130 (“Enactment of Title VI ended the most blatant forms of healthcare discrimination. But Title VI has proved ineffective in ending the less obvious inequities caused by policies and practices that disproportionately adversely impact on racial minorities. Title VI's deficiencies are inherent in the structure of the statute: It relies on administrative enforcement; it fails to define statutorily prohibited discrimination and the evidentiary burdens in a case alleging discrimination because of disparate racial impact; it relies on voluntary receipt of federal funds; and it lacks monetary remedies in a private enforcement action.”). See also Watson, S.D., “Reinvigorating Title VI: Defending Health Care Discrimination — It Shouldn't Be So Easy,” Fordham Law Review, 58 (1990): 939–78; Smith, , supra at 9.Google Scholar

Office for Civil Rights, U.S. Department of Health and Human Services, OCR Update (Fall 1999): 1–12.Google Scholar

Id. at 3.Google Scholar

Ng, B. et al., “Ethnic Differences in Analgesic Consumption for Postoperative Pain,” Psychosomatic Medicine, 58 (1996): 125–29.Google Scholar

See Todd, , supra note 22.Google Scholar

See Ng, et al., supra note 66.Google Scholar

Id. at 127.Google Scholar

Id. at 128.Google Scholar

Ng, B. et al., “The Effect of Ethnicity on Prescriptions for Patient-Controlled Analgesia for Post-Operative Pain,” Pain, 66 (1996): 9–12.Google Scholar

Id. at 11.Google Scholar

Id. at 12.Google Scholar

Dimsdale, J.E., “Stalked by the Past: The Influence of Ethnicity on Health,” Psychosomatic Medicine, 62 (2000): 161–70.Google Scholar

Bartfield, J.M. et al., “Physician and Patient Factors Influencing the Treatment of Low Back Pain,” Pain, 73 (1997): 209–11.CrossRefGoogle Scholar

Id. at 211.Google Scholar

Hahn, R.A., “The State of Federal Health Statistics on Racial and Ethnic Groups,” JAMA, 267, no. 2 (1992): 268–71.Google Scholar

Saint Louis, C. and Nussbaum, E., “What They Were Thinking about Race, All-of-a-Kind Family,” New York Times Magazine, July 16, 2000, at 31.Google Scholar

Wright, L., “Who's Black, Who's White, Who Cares: Reconceptualizing the United States' Definition of Race and Racial Classifications,” Vanderbilt Law Review, 48 (1995): 513–67, at 561.Google Scholar

King, P.A., “Race, Justice and Research,” in Kahn, J.P., Mastroianni, A.C., Sugarman, J., eds., Beyond Consent Seeking Justice in Research (New York: Oxford University Press, 1998): 88–110.Google Scholar

“Hospital personnel [are] often unsure how to classify patients. … [but are] reluctant to ask the patient directly.” See Blustein, J., “The Reliability of Racial Classifications in Hospital Discharge Abstract Data,” American Journal of Public Health, 84 (1994): 1018–21, citing Report of Results of the OSHPD Reabstraction Project (Sacramento, California: Office of Statewide Planning and Development, California Department of Health, 1990).Google Scholar

Todd, K.H., “Pain Assessment and Ethnicity,” Annals of Emergency Medicine, 27 (1996): 421–23.Google Scholar

Centers for Disease Control, “Use of Race and Ethnicity in Public Health Surveillance,” MMWR (Morbidity and Mortality Weekly Report), 42 (1993): 1–17.Google Scholar

See Blustein, , supra note 81.Google Scholar

See Todd, , supra note 22.Google Scholar

On October 20, 1997, the Office of Management and Budget (OMB) published Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. See 62 Fed. Reg. at 58,781–58,790. The standards changed the data collection policies for all federal agencies. Under the new policy, federal agencies are required to offer respondents the option of selecting one or more of the following racial categories: American Indian or Alaska Native; Asian; Black or African American; Native Hawaiian or Other Pacific Islander; and White. These categories are the minimum set for data on race for federal statistics, administrative reporting, and civil rights compliance reporting. For ethnicity, the standards require the collection of data on whether or not a person is of “Hispanic or Latino” culture or origin. See Tabulation Working Group of the Interagency Committee for the Review of Standards for Data on Race and Ethnicity, Provisional Guidance on the Implementation of 1997 Standards for Federal Data on Race and Ethnicity (December 15, 2000), available on-line at <http://whitehouse.gov/omb/inforeg/r&e_guidance2000update.pdf>..>Google Scholar

Perez-Stable, E.O. et al., “The Effects of Ethnicity and Language on Medical Outcomes of Patients with Hypertension or Diabetes,” Medical Care, 35, no. 12 (1997): 1212–19.Google Scholar

See Todd, , supra note 22.Google Scholar

“The key to ensuring equal access to benefits and services for LEP persons, is to ensure the service provider and the LEP client can communicate effectively, i.e., the LEP client should be given information about, and be able to understand, the services that can be provided by the recipient to address his/her situation and must be able to communicate his/her situation to the recipient service provider. Recipients are more likely to utilize effective communication if they approach this responsibility in a structured rather than on an ad hoc basis.” See Office for Civil Rights, Guidance Memorandum, Title VI Prohibition Against National Origin Discrimination — Persons with Limited-English Proficiency (January 29, 1998).Google Scholar

See M.G.L. c. 111, § 25J (2000).Google Scholar

See Adult Sickle Cell Disease Focus Group Voices, supra note 1.Google Scholar

Cooper-Patrick, L. et al., “Race, Gender, and Partnership in the Patient-Physician Relationship,” JAMA, 282 (1999): 583.CrossRefGoogle Scholar

Id. at 583.Google Scholar

Kaplan, S.H. et al., “Characteristics of Physicians with Participatory Decision-Making Styles,” Annals of Internal Medicine, 124 (1996): 497–505.Google Scholar

Id. at 588. Cooper-Patrick references Schulman, K.A. et al., “The Effect of Race and Sex on Physicians' Recommendations for Cardiac Catheterization,” N. Engl. J. Med., 340 (1999): 618–26.Google Scholar

See Cooper-Patrick, , supra at note 92.Google Scholar

Fiscella, K. et al., “Inequality in Quality Addressing Socioeconomic, Racial, and Ethnic Disparities in Health Care,” JAMA, 283 (2000): 2579–2584.Google Scholar

Krieger, N. et al., “Measuring Social Class in US Public Health Research,” Annual Review Public Health, 18 (1997): 341–378.Google Scholar

See Cleeland, et al., supra notes 46 and 48.Google Scholar

Watson, S.D., “Health Care in the Inner City: Asking the Right Question,” North Carolina Law Review, 71 (1993): 1647–71.Google Scholar

See Adult Sickle Cell Disease Focus Group Voices, supra note 1.Google Scholar

U.S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, Acute Pain Management in Adults: Operative Procedures (Quick Reference Guide for Clinicians No. 1a), AHCPR Pub. No. 92–0019 (Washington, D.C.: U.S. Gov't Printing Office, 1993).Google Scholar

Dalton, J. et al., “A Call for Standardizing the Clinical Rating of Pain Intensity Using a 0 to 10 Rating Scale,” Cancer Nursing, 21, no. 11 (1998): 46–49.Google Scholar

See Todd, , supra note 26, at 927–28.Google Scholar

See Council on Ethical and Judicial Affairs, “Black-White Disparities in Health Care,” JAMA, 263 (1990): 2346.Google Scholar

Noah, B.A., “Racial Disparities in the Delivery of Health Care,” San Diego Law Review, 35 (1998): 135–78. Noah comments: “Because of the complex nature of health care decision making, however, attributing disparities in health care to racism may not accurately portray the whole of the problem.”Google Scholar

Gamble, V.N., “Under the Shadow of Tuskegee: African Americans and Health Care,” American Journal of Public Health, 87 (1997): 1773–78. Dr. Gamble references a study published in the Journal of the American Medical Association: Blendon, R. J., “Access to Medical Care for Black and White Americans: A Matter of Continuing Concern,” JAMA, 261 (1989): 278–81.Google Scholar

LaVeist, T.A., Wallace, J.M., and Howard, D.L., “The Color Line and the Health of African Americans,“ Humboldt Journal of Social Relations, 21, no. 1 (1995): 119-137.Google Scholar

Dula, A., “Bioethics: The Need for a Dialogue with African Americans,” in Dula, A. and Goering, S., eds., “It Just Ain't Fair”: The Ethics of Health Care for African Americans (Westport, Connecticut: Praeger, 1994): 11–20.Google Scholar

LaVeist, T.A., “Why We Should Continue to Study Race … But Do a Better Job: An Essay on Race, Racism and Health,” Ethnicity & Disease 6 (1996): 21–29; King, P.A., “Race, Justice, and Research,” in Kahn, J.P. et al., eds., Beyond Consent (New York: Oxford University Press, 1998): 88–110.Google Scholar

See Council on Ethical and Judicial Affairs, supra note 105.Google Scholar