Thaddeus Mason Pope, JD, PhD
Ever since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) into law on March 23, 2010, the nondiscrimination provision of the law, Section 1557, which prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs or activities, has not been as saliently visible or contested as other provisions.1 But, over the past 2 years, this “nondiscrimination” section of the ACA has been getting more attention.
First, the U.S. Department of Health and Human Services (HHS) promulgated implementing regulations in May 2016 that became effective in July 2016.2 Second, federal agencies and private litigants have amplified enforcement of those regulations over the past 12 months, both levying more fines and filing more lawsuits. Therefore, it has become increasingly important that oncology clinicians understand their obligations under Section 1557, especially with respect to patient communication equality.3
Prevalence of Patients With Communication Barriers
Three key groups of patients with cancer face communication barriers to appropriate health care. They include patients with limited English proficiency, patients who are deaf or hard of hearing, and patients who are blind or visually impaired. All three groups are protected from nondiscrimination under Section 1557 of the ACA.
Approximately 60 million people in the United States speak a language other than English, and more than 40% have limited English proficiency, meaning they report speaking or understanding English less than “very well.”4 The population with limited English proficiency represents more than 7% of the total U.S. population and probably more than 7% of patients with cancer. The proportion of patients with limited English proficiency in California, Texas, New York, and Hawaii is even higher.4
More than 1 in 10 patients with cancer have limited English proficiency or are visually or hearing disabled. This often has a significant adverse impact on their quality of care.— Thaddeus Mason Pope, JD, PhD
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In addition to the high number of American adults with language difficulties, approximately 38 million Americans report having trouble hearing. For many, their hearing loss is disabling, and the risk increases with age. Although only 2% of those between the ages of 45 and 54 have disabling hearing loss, that rate increases to 8% for those between the ages of 55 and 64; to 25% for those between the ages of 65 and 74; and to 50% for those 75 years of age and older.5 In all, 4% to 6% of the U.S. population and probably 4% to 6% of patients with cancer have a disabling hearing impairment.6,7
Finally, 26 million American adults have vision loss, meaning they have trouble seeing even when wearing glasses or contact lenses.7,8 For more than 2% of these individuals, their vision loss is disabling. Visual disability rises to 6% for those older than age 65. Again, the proportion of visually disabled individuals in the U.S. population is probably mirrored among patients with cancer.
In summary, the prevalence of patients with cancer who have a communication barrier is significant. More than 1 in 10 patients with cancer have limited English proficiency or are visually or hearing disabled. This often has a significant adverse impact on their quality of care.
How Communication Barriers Impede Appropriate Health Care
Whether the problem is limited English proficiency or a visual or hearing disability, many patients with cancer cannot effectively communicate with their clinicians. Consequently, these patients face obstacles to accessing health services and receiving appropriate care. For example, individuals with limited English proficiency are less likely to receive breast, cervical, or colorectal cancer screening9,10; are
Law and Ethics in Oncology explores the legal and ethical issues oncologists must be aware of in this era
of precision medicine and changing health-care policy, both to protect patients’ rights and to safeguard
against potential legal jeopardy.
more likely to be misdiagnosed11; and are more likely to receive aggressive value-discordant treatment.12
Communication barriers can also result in inappropriate testing, an increased risk of adverse medication reactions, lower medication adherence, and a host of other adverse events.13-17 Patients with cancer are particularly susceptible to misdiagnoses, medical errors, and serious adverse events, because cancer therapy is comparatively more complex, confusing, and value-laden than treatments for other diseases.18 Thus, there is an even greater need for accurate communication in cancer care.
Complying With Section 1557 of the ACA
Section 1557 of the ACA applies to health programs and activities, “any part of which is receiving Federal financial assistance.” Therefore, hospitals, clinics, and physician practices receiving Medicare or Medicaid reimbursement must comply with the law. Federal financial assistance also includes contracts, subsidies, and grants from the National Institutes of Health.
Moreover, if any single part of the health program or activity of the covered entity receives federal financial assistance, then all of its programs and activities are subject to Section 1557. Oddly, providers receiving Medicare Part B payments alone are not receiving “Federal financial assistance” for purposes of Section 1557. Nevertheless, HHS determined that Section 1557 “likely covers almost all licensed physicians because they accept Federal financial assistance from sources other than Medicare Part B.”19
Requirements of Section 1557 and Communication Equality
Section 1557 requires that “an individual shall not. . .be excluded from participation in, be denied the benefits of, or be subjected to discrimination” because of race, color, national origin, age, disability, or sex (including gender identity and sex stereotyping).1,2 The communication equality requirements flow from the prohibitions against disability and national origin discrimination. Without assistance, disabled patients and patients with limited English proficiency cannot participate in their health care to the same extent as patients not in the protected classes.
With respect to patients with limited English proficiency, clinicians must provide ‘meaningful access’ to care with the use of language assistance services.— Thaddeus Mason Pope, JD, PhD
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With respect to patients with visual and hearing disabilities, clinicians must provide auxiliary aids and services, such as qualified interpreters on-site or through video-remote services, qualified readers, taped texts, audio recordings, Braille materials and displays, or screen reader software. The 2016 regulations require clinicians to give “primary consideration” to the patient’s preferred auxiliary aid or service for communication. Furthermore, clinicians must make these auxiliary aids and services available free of charge and in a timely manner.
With respect to patients with limited English proficiency, clinicians must provide “meaningful access” to care with the use of language assistance services. And although language assistance services with certified or licensed interpreters is the gold standard, it is adequate to use interpreters who are “qualified,” according to criteria in the 2016 regulations. Unlike the requirements for patients with disabilities, the rules for patients with limited English proficiency are flexible and context-specific, considering factors such as the nature and importance of the health program and the communication at issue. Services must be free of charge, accurate, and timely.
Many Providers Are Not Complying With the Law
Despite the implications for quality of care and the legal duties, a substantial percentage of providers are not complying with Section 1557 of the ACA. One study found that more than 30% of U.S. hospitals do not offer any sort of language services.20,21 Other studies also report widespread noncompliance.21-23 Clinicians in these facilities often use untrained bilingual staff, the patient’s family members, or even their own limited language ability to communicate with patients. However, these methods are not allowed except in emergencies. “Despite the law, and despite the obvious benefits, thousands of hospitals and other medical facilities continue to fall short” of Section 1557.24
Penalties for Noncompliance
Section 1557 authorizes four types of enforcement remedies. First, the HHS Office of Civil Rights investigates complaints, often reaching voluntary settlement agreements that require the provider to amend policies and implement training. Second, the Office of Civil Rights refers more egregious cases for enforcement proceedings by the U.S. Department of Justice. The Department of Justice has settled more
Enabling patients with physical disabilities or limited English proficiency to meaningfully participate in their care promotes patient safety and quality of care.— Thaddeus Mason Pope, JD, PhD
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than a dozen cases, with fines exceeding $100,000.25 Third, providers can lose federal funding and face false claims liability. Fourth, Section 1557 authorizes a private right of action.
The private lawsuit may soon become the most prevalent type of enforcement. For example, in July 2018, Song Xie sued Memorial Hermann Health System, alleging that his stroke occurred because neither he nor his son could read and follow his English postdischarge instructions.26 Mr. Xie contended that the hospital should have discharged him using a qualified Chinese interpreter and that it should have provided him with translated discharge instructions. The Xie case is not unique. A growing number of patients are suing providers for not providing communication equality under Section 1557.27
Assessing Compliance With Section 1557
Because both federal agencies and private litigants are more vigorously enforcing Section 1557 requirements for communication equality, clinicians should reassess their compliance with the law. Fortunately, both the Office of Civil Rights and other government agencies have developed useful guidance and other resources.28,29 Clinicians should also assess their compliance under analogous state laws.30,31 Most important, enabling patients with physical disabilities or limited English proficiency to meaningfully participate in their care promotes patient safety and quality of care. ■
DISCLOSURE: Dr. Pope reported no conflicts of interest.
Dr. Pope is Director of the Health Law Institute and Professor of Law at the Mitchell Hamline School of Law in Saint Paul, Minnesota (www.thaddeuspope.com).
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.
REFERENCES
1. Pub. L. 111-148, Title I, § 1557, March 23, 2010, 124 Stat. 260, codified at 42 U.S.C. § 18116.
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24. Eldred SM: With scarce access to interpreters, immigrants struggle to understand doctors’ orders. NPR, August 15, 2018.
25. U.S. Department of Justice: Barrier-free health care initiative. Available at www.ada.gov/usao-agreements.htm. Accessed December 10, 2018.
26. Xie v. Memorial Hermann Health System, No. 2018-16552 (Harris County District Court, Texas).
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28. U.S. Department of Health & Human Services Office of Civil Rights: Civil rights for providers of health care and human services. Available at www.hhs.gov/civil-rights/for-providers/index.html. Accessed December 10, 2018.
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