American Journal of Law & Medicine

Translating Rights into Access: Language Access and the Affordable Care Act

I. INTRODUCTION

More than twenty-four million people in the United States are considered limited English proficient (LEP), (1) and numerous studies have documented the consequences of communication barriers in healthcare. These consequences include: patients' inability to become engaged and involved in their care; the absence of crucial information--including cultural information--essential to healthcare quality; risks to patient safety arising from the misunderstanding of physician instructions; and ethical and legal lapses stemming from the absence of informed consent. Addressing healthcare rights necessarily entails coming to grips with how to facilitate communication and the exchange of information between the healthcare system and an increasingly diverse patient population.

The history of language access services in healthcare is grounded in two distinct bodies of law: the law of informed consent and civil rights law. Modern notions of informed consent law--which have their roots in the Nuremberg trials of the late 1940s--would recognize a cause of action in tort where a lack of adequate communication creates a barrier to an LEP patient's ability to consent to care. In modern healthcare law, the ability of patients to affirmatively give informed consent to treatment is considered a fundamental element of healthcare quality. In addition, a substantial body of civil rights law--specifically, Title VI of the 1964 Civil Rights Act, which bars discrimination in federally supported healthcare activities on the basis of race or national origin, and section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA), which together prohibit discrimination against qualified persons with disabilities in public programs and by public accommodations--has extended the principle of language access in healthcare by establishing the concept of communication-related rights.

The Patient Protection and Affordable Care Act (commonly known as the Affordable Care Act, and referred to as the ACA in this Article) (2) borrows from the traditions of both race- and disability-based anti-discrimination law and, in the process, gives new resonance to the nexus of healthcare quality and civil rights law. It does so by introducing a new legal structure for healthcare that seeks to realign the system away from concepts of largesse and toward an expectation of equity, not just in access to health insurance coverage, but in the receipt of healthcare that is appropriate in both level and quality. With time, careful implementation, and effective oversight and enforcement, the ACA has the potential to improve healthcare access and quality for LEP individuals and to reduce communication barriers between patients and providers. The ACA positions the nation for this important advance through a series of reforms, some aimed at reducing barriers to health insurance coverage, some directly aimed at building health system capacity in communities in which it is needed, and some by focusing the nation on the development of national standards that permit the evaluation of quality at the critical sub-population level, where disparities in health and healthcare appear. In essence, the ACA attempts to bend the health equity curve by introducing a legal architecture within the healthcare system that seeks to place its financial transaction dimensions within the broader context of patient outcomes. Viewing the ACA through this lens, it is possible to see its eventual promise even for the most vulnerable populations.

Nonetheless, individual enforcement actions will continue to play a crucial role in defining the rights of patients and the responsibilities of providers. The ACA creates no federal right to healthcare of a certain quality, nor does it immediately broaden the armament of civil rights enforcement tools through new rights of action or a realignment of the burden of proof in disparate impact litigation, the most common type of civil rights case. The ACA offers a heightened set of global and systemic expectations about how the healthcare system will respond to patients, even patients who require some redesigned systems and practices to ensure the achievement of high quality healthcare.

This Article focuses on several aspects of language services law and policy in healthcare. Part II presents evidence regarding the role of communication in healthcare quality as well as evidence of the scope of the language access problem. It also presents a brief overview of the rise of the concept of informed consent as a basic dimension of the law of healthcare quality. Part III traces the evolution of relevant language services in health law and policy, including the Civil Rights Act, the ADA, and other sources of law. Part IV reviews the various ways in which the ACA presents opportunities to advance effective communication in healthcare. Part V concludes with a discussion of the legal, policy, and delivery challenges that remain, including the need for vigilant oversight of relevant ACA provisions and strong enforcement of extant laws to ensure LEP individuals' meaningful access to care.

II. PATIENT COMMUNICATION AS A FOUNDATION OF HEALTHCARE

A. PATIENT/PROVIDER COMMUNICATION AS A CORNERSTONE OF HEALTHCARE QUALITY

High quality healthcare requires the free and effective exchange of information between a patient and the patient's healthcare provider. (3) Evidence related to effective communication and language concordance between physicians and patients suggests that patients are more likely to keep appointments, improve medication adherence, have fewer emergency department visits, (4) have a more thorough understanding of their condition, (5) and have fewer adverse health outcomes when they communicate with their physicians in an effective fashion. (6) These patients also report greater satisfaction (7) and better health status. (8) Conversely, an absence of effective patient/provider communication standards can lead to deleterious outcomes. For example, LEP patients experience language barriers that adversely affect the delivery of care, (9) which can lead to misdiagnoses (10) and poor treatment decisions. (11) For these patients, adherence (12) and follow-up compliance (13) to medications are significantly lower than they are for English-speaking patients. Patients with LEP receive fewer primary care (14) and preventive services (such as mammograms) (15) and are less likely to have a regular source of primary care. Another study found that "[i]n unadjusted analyses, individuals with limited English proficiency were more likely to forgo needed medical care and less likely to have a healthcare visit, compared to individuals who were proficient in English." (16) Not surprisingly, LEP patients also express lower overall satisfaction with their care. (17)

The Institute of Medicine (IOM) defines high quality healthcare as that which is safe, timely, effective, patient-centered, efficient, and equitable. (18) A critical component of each of these elements is effective communication between patients and providers. Scheduling appointments, describing symptoms, discussing barriers to care, prescribing treatment plans, and monitoring adherence and health outcomes require a culturally competent, well-orchestrated communication system. (19) A wealth of research supports implementation of three elements to support an effective communication system: patient-centered care (PCC), a particular focus on vulnerable patient populations, and the use of evidence-based quality improvement efforts.

PCC, which the IOM defines as "respecting and responding to patients' wants, needs, and preferences, so that they can make choices in their care that best fit their individual circumstances," (20) lies at the core of effective patient/provider interactions. PCC aims to foster a dialogue between provider and patient that stresses the importance of healing relationships, the exchange of information regarding the patient's wants and needs, recognition of the patient's emotions, informed, collaborative decision-making, and facilitation of patient self-management. (21)

Research shows that outcomes such as patient satisfaction, treatment adherence, and self-management of chronic disease are most successful when providers practice PCC. (22) For example, a study conducted in 2006 found that in HIV-positive patients, the perception of being "known" by a physician (which is the crux of PCC) was significantly and independently associated with receiving highly active antiretroviral therapy (HAART), adhering to HAART, and having undetectable serum HIV RNA. (23) Similarly, in a 2010 study, researchers found that PCC was associated with a significantly lower probability of death one year after discharge for a myocardial infarction, controlling for patient characteristics and technical quality of care. (24) In a third study, researchers found that patient-centered communication correlated to, among other things: patients' perceptions of finding common ground with their healthcare providers; a better recovery for patients from their discomfort; better emotional health two months after patients' visits; and fewer diagnostic tests and referrals. (25) These results demonstrate that meaningful patient-centered communication between a patient and her provider can lead to improved patient health and adherence outcomes.

Many patients, however, do not find "standard communication" accessible for a variety of reasons, and thus are unable to reap the improved health outcomes that can be attained through standard communication practices. These patients fall into a "vulnerable population," such as patients with a disability, limited or no English proficiency, limited health literacy, or cultural backgrounds that are not well understood by the hospital and staff. (26) Because the quality of patient/provider communication is so closely linked to patient health outcomes, when barriers exist that prevent effective patient/provider communication, poorer health outcomes are more likely to ensue. In recent years, the healthcare system has made significant strides to address communication discrimination against patients for whom language is a barrier and for those who are disabled.

Culturally competent communication has surfaced as the principal mechanism to combat discrimination against populations that suffer racial and ethnic disparities in healthcare. The chief aim of the cultural competency movement is to increase health equity for disadvantaged populations and to bridge the realm of the provider with that of the patient. This may include the use of interpreters and "cultural brokers"--"individuals who serve as liaisons between patients and providers who are from substantially different cultural backgrounds, to mediate interactions, enhance mutual understanding and reduce conflict." (27) This approach captures the essence of effective communication: culturally competent care and dialogue enables the patient and provider to experience the interaction from the other's perspective and thus interact on a common ground. (28)

Cultural competency, paired with PCC, has the potential to reduce racial and ethnic disparities in healthcare delivery and outcomes. Physicians have been shown both to stereotype patients based on race and ethnicity and make medical decisions based on the race of a patient. (29) By incorporating PCC and cultural competency into routine patient/provider interactions, power will ideally be equalized between patients and physicians, thus potentially reducing disparities in clinical decisions. (30)

Over the past two decades, academic, government, managed care, and community healthcare programs have begun to utilize models of culturally competent care. (31) The efforts have been bolstered by the Federal Health Resources and Services Administration, which funds the National Center for Cultural Competence in order to assist healthcare and mental healthcare programs in their development of culturally and linguistically competent service delivery systems. (32)

The healthcare system has also made moves to address existing communication disparities that pervade the disabled population. For example, in 2005--the Fifteenth anniversary of the ADA--the U.S. Surgeon General released The Surgeon General's' Call to Action to Improve the Health and Wellness of Persons with Disabilities, (33) which chronicles the poor health outcomes for disabled persons and notes the dearth of accessible health information resources for persons with disabilities. The report urges medical educators to "[i]ncrease knowledge among health care professionals and provide them with tools to screen, diagnose, and treat the whole person with a disability with dignity." (34) Since then, many reports have detailed recommendations on how to fulfill the Surgeon General's call to action. A commentary recently published in the Journal of the American Medical Association argues that certain general principles for providing care to the disabled should be incorporated into medical education. The most basic principles include "sitting down to speak eye-to-eye with a wheelchair user or talking directly to a hearing-impaired person, rather than to that person's sign language interpreter." (35) The aim is to better equip health professions students with the tools required to effectively communicate with patients regardless of their disability, so that as these students graduate and enter the healthcare workforce, they will establish a new precedent of engaging in patient-appropriate communication.

Furthermore, government agencies and independent health systems are increasing their focus on the efficacy of patient/provider communication in performance improvement measurements. Most notably, in the 1990s, the Department of Health and Human Services (HHS) Agency for Healthcare Research and Quality established the Consumer Assessment of Healthcare Providers and Systems (CAHPS), which is an extensively validated survey tool available free of charge to the public. (36) The goal of CAHPS is "to measure, report on, and improve the quality of health care from the perspective of consumers and patients." (37) The CAHPS standardized surveys emphasize consumer and patient experience and foster open communication among health systems to compare results and establish benchmarks. (38) Based on the data compiled in the surveys, CAHPS has created improvement guides, quality improvement instructions, and intervention ideas for health systems.

Following the lead of consumer experience improvement programs like CAHPS, hospitals and health systems are making efforts to build provider and patient communication into performance improvement measurements. …

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