Consumer Bill of Rights and Responsibilities
Respect and Nondiscrimination
Statement of the Right
Consumers have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality health care system.
Consumers must not be discriminated against in the delivery of health care services consistent with the benefits covered in their policy or as required by law based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
Consumers who are eligible for coverage under the terms and conditions of a health plan or program or as required by law must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
Consumers want to be treated with respect and they want to be treated fairly. An environment of mutual respect is essential to maintain a quality health care system. Incidences of discrimination -- real and perceived -- mar the relationship between consumers and their health care professionals, plans, and institutions. Multiple consumer surveys (Levinson et al., 1997; Davis et al., 1995; Edgeman-Levitan and Cleary, 1996) have found that many consumers' complaints about the current health care system have their root in the perception that people believe they are not being treated with respect.
Respect has been defined as recognizing a "person's capacities and perspectives, including his or her right to hold certain views, to make certain choices, and to take certain actions based on personal values and beliefs" (Faden and Beauchamp, 1986). Manifestations of disrespect in the health care setting described by consumers in recent research (Levinson et al., 1997) and interviews include: poor communication with their doctor, feeling rushed or ignored, lack of dignity during examinations, experiencing extensive waiting room delays, receiving inadequate explanations or advice, having inadequate time with the doctor during routine visits, feeling that complaints are not taken seriously by providers, and feeling that providers are more concerned with holding down the cost of medical care than with giving the best medical care. Conversely, consumers defined respectful treatment as that which takes into consideration the values, preferences, and expressed needs of the patient. In addition, consumers wanted providers to communicate well, to be respectful of the patient's time, and to give emotional support to alleviate the patient's fear and anxiety.
In order to extend consumers the respect they deserve, members of the health care industry should strive to:
- Provide consumers with assurances that disrespect or discrimination of any kind is intolerable.
- Provide consumers with information regarding existing laws prohibiting disrespectful or discriminatory treatment.
- Provide consumers with an appropriate amount of time to fully discuss their concerns and questions.
- Provide consumers with reasonable assistance to overcome language (including limited English proficiency), cultural, physical or communication barriers.
- Provide consumers with a timely notice and explanation of changes in fees or billing practices.
- Avoid lengthy delays in seeing a patient; when delays occur, explain why they occurred and, if appropriate, apologize for such delays.
A key element of respectful and fair treatment is protection against discrimination in the delivery of health care services, and in marketing and enrollment, for those eligible for coverage under the terms and conditions of a health plan or program, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
Sex. Disparities in medical treatment based on sex have been documented in a number of areas, including: diagnosis and treatment of coronary artery disease (Beery, 1995), kidney transplantation and dialysis, heart transplantation, cardiac catheterization, and diagnosis of lung cancer (AMA Council on Ethical and Judicial Affairs, 1991). Researchers have found that women are less likely to have diagnostic testing, even when functional disability and risk are higher. Women's complaints are seen as less urgent, and fewer referrals follow as a result of this belief (Tobin et al., 1987). Disparities have also been found in the quality of the doctor-patient relationship. For example, one-quarter of women (compared with 12 percent of men) reported that they have been "talked down to" or "treated like a child by a physician," and 17 percent of women (compared with 7 percent of men) had been told that a medical condition they experienced was "all in their head" (The Commonwealth Fund, 1993; Horton, 1995).
Race, ethnicity, national origin, and religion. Discrimination on the basis of race, ethnicity, national origin, or religion in the provision of health care has also been well documented. There is evidence of disparities in the quality of care, access to health care (because of language or geographic barriers), and the amount of care given to minorities as compared with others (Kahn et al., 1994; Giles et al., 1995; Rosenbaum et al., 1997; Smollar, 1988). In the case of facilities or individuals who accept Federal funds, Federal civil rights statutes prohibit the denial of services; the provision of a different service or services in a different manner from those provided to others; and the segregation of or separate treatment of individuals in any matter related to receiving services (Office of Civil Rights, 1990).
Age. Discrimination against consumers based on their age also occurs in the health care industry including: less aggressive treatment for elderly women with breast cancer and lower than average referral rates for mental health services in older people (Nattinger et al., 1992; Osteen et al., 1992; Ayanian et al., 1993). The Age Discrimination Act of 1972 also prohibits discrimination based on age by any institution or health care provider who accepts Federal funds.
Sexual orientation. Gay and lesbian patients have received reduced care or have been denied care because of their sexual orientation (AAPHR, 1994). Discrimination against gay/lesbian consumers has sometimes been compounded by fears of HIV.
Disability status. There is an extensive history of discrimination against people with disabilities and chronic illnesses that has led to action by Federal and State Government. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against individuals with real or perceived disabilities in employment, public services, public accommodations, communications, and employer-provided health insurance. The Health Insurance Portability and Accountability Act of 1996 prohibits the exclusion of an individual from the group insurance market for more than 12 months based on a preexisting medical condition. The Mental Health Parity Act of 1996 prohibits differential lifetime or annual caps on coverage for physical and mental illnesses in certain situations.
Despite passage of these landmark laws, not all Americans living with disabilities or adverse medical conditions have access to health coverage at a cost they believe is fair or affordable. This is particularly true for consumers attempting to purchase coverage in the individual insurance market. Research into further refinements in the insurance market is needed to assist these individuals. The Commission strongly urges insurers, public and private purchasers, State and Federal Governments, and others to explore all policy options to make health coverage available and affordable to Americans who wish to obtain it, especially those who are living with mental or physical disabilities and chronic illnesses.
Finally, despite recent improvements, many health care facilities remain inaccessible to individuals with disabilities (Savage, 1997). The Commission believes that elimination of physical and communication barriers in health care facilities should be a higher priority for government agencies charged with enforcing the ADA.
Source of payment. The health care system currently is undergoing an historic transformation in which low-income Medicaid beneficiaries are being enrolled into private health plans. While this is a positive development in terms of access for traditionally vulnerable populations to high-quality care, it is almost certain to create additional tensions that could be manifest in discrimination. Providers who agree to accept Medicaid beneficiaries must provide equal access, care, and waiting times to those patients. It will be vitally important for State and Federal agencies to closely monitor the provision of care to Medicaid beneficiaries as they move into new health plans.
Implications of the Right
Consumers will need to be vigilant in reporting instances of discrimination based on the factors discussed in this chapter. Consumers also must extend the same level of respect to health care providers and others in the health care system that they demand of same. An environment of mutual respect is essential to a healthy relationship between consumers and those who care for them.
Health care professionals and other health workers have the most direct contact with patients and, therefore, have the greatest responsibility to treat health care consumers with respect and to ensure that they do not discriminate. Providers have a responsibility to listen to patients and take their concerns and complaints seriously. Providers also have a responsibility to monitor their treatment of patients to assure they are treated with respect and nondiscrimination and to correct problems when they occur.
Health care facilities that renovate existing facilities or construct new ones must meet a high standard of access in order to avoid discriminating against persons with disabilities. While there is no ADA requirement to "retrofit" existing facilities to make them accessible, there is a responsibility to remove "readily achievable" physical and communication barriers. All health care providers should assess the level of access in their medical facilities and take steps to provide effective communication and unimpeded physical access to the maximum extent possible.
Health plans will need to examine the standards and incentives that exist within their systems that may inadvertently discourage providers from attending to the interpersonal aspects of health care quality that can be manifest as disrespect. Consumers enrolled in health plans with defined networks of providers should have access to their plans' participating providers, without regard to the source of their coverage (e.g., Medicare, Medicaid, employer-sponsored plan).
Quality oversight organizations should utilize tools that allow accurate measurement of dimensions of health care quality that reflect consumer concerns about being treated with respect. Public disclosure of these findings, together with measurements of clinical quality of care, cost, benefit, and other salient information can allow consumers to determine the relative importance they place on such information and make their purchasing decisions accordingly.
Health care worker education and training programs need to recognize and act upon the need for improvements in communication skills by providers. Receiving inadequate explanations and advice, having inadequate time to receive answers to questions, and failure to attend to the need for emotional support can have adverse consequences on health outcomes (Bame et al., 1993; Patterson et al., 1991; Juncos, 1990). Similarly, education and training programs need to develop and implement course content addressing the significance of cultural attitudes on the effectiveness of health care and the importance of being sensitive to the varying needs of people with disabilities, including those with sensory or cognitive disabilities, who often require auxiliary aids or extra time and plain-language explanation to ensure effective communication. Health plans, hospitals, and other large institutional providers are encouraged to have on-site interpreters for any language population that exceeds a specified standard (e.g., 5 percent or more) and telephone interpreter services for other language minorities. Written material provided to patients should also be translated for the larger linguistic groups.
References and Selected Reading
AMA Council on Ethical and Judicial Affairs. Genetic Disparities in Clinical Decision-Making: Council Report. January 1991; 15(4):25-35.
American Associations of Physicians for Human Rights. Anti-Gay Discrimination in Medicine: Results of a National Survey of Lesbian, Gay and Bisexual Physicians. San Francisco; 1994.
Ayanian JZ, Kohler BA, Abe T, et al. "The Relation Between Health Insurance Coverage and Clinical Outcomes among Women with Breast Cancer." N Eng J Med 1992; 326:1102-1107.
Bame S, Petersen N, et al. "Variation in Hemodialysis Patient Compliance According to Demographic Characteristics." Soc Sci Med, Oct. 1993; 37(8):1035-1043.
Beery TA. "Diagnosis and Treatment of Cardiac Disease: Gender Bias in the Diagnosis and Treatment of Coronary Artery Disease." Heart & Lung. November 1995; 24(4):427-435.
The Commonwealth Fund. The Commonwealth Fund Survey of Women's Health. New York: July 1993.
Davis K, Collins KS, et al. "Choice Matters: Enrollees' Views of Their Health Plans." Health Affairs, Summer 1995; 9-112.
Edgeman-Levitan S, Cleary PD. "What Information Do Consumers Want and Need? A Synthesis of Research to Date, Plus Interviews with Health Plan Managers and Consumer Advocates." Health Affairs, Winter 1996; 15(4):42-56.
Faden R, Beauchamp T. A History and Theory of Informed Consent. New York: Oxford University Press, 1986; 8-9.
Giles WH, Anda RF, Casper ML, et al. "Race and Sex Differences in Rates of Invasive Cardiac Procedures in US Hospitals." Arch Intern Med 1995; 155.
Horton JA, ed. The Women's Health Data Book: A Profile of Women's Health in the United States. Washington, DC: Elsevier; 1995.
Kahn KL, Pearson ML, et al. "Health Care for Black and Poor Hospitalized Medicare Patients." JAMA 1994; 27(1).
Juncos LI. "Patient Compliance and Angiotensin Converting Enzyme Inhibitors in Hypertension." J Cardiovascular Pharmacol 1990; 15(3):S22-S25.
Levinson W, Roter DL, et al. "Physician-Patient Communication: The Relationship with Malpractice Claims among Primary Care Physicians and Surgeons." JAMA 1997; 277(7):553-559.
Nattinger AB, Gottlieb MS, Veum J, et al. "Geographic Variation in the Use of Breast-Conserving Treatments for Breast Cancer." N Eng J Med 1992; 326:1102-1107.
Office of Civil Rights. Fact Sheet. U.S. Department of Health and Human Services; 1990.
Osteen RT, Steele GD Jr, Menck HR, et al. "Regional Differences in Surgical Management of Breast Cancer." CA Cancer J Clin 1992; 42:39-43.
Patterson R, Greenberger PA, et al. "Potentially Fatal Asthma; the Problem of Noncompliance." Ann Allergy, Aug 1991; 67(2):138-142.
Rosenbaum S, Serrano R, et al. "Civil Rights in a Changing Health Care System," Health Affairs Jan-Feb 1997.
Savage E. U.S. Department of Justice. verbal communication; September 1997.
Smollar D. "Success of Indochinese Students May Vary with Ethnic Factors." Los Angeles Times, Feb 16, 1988.
Tobin JN, et al. Ann Internal Med. 1987;107.
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