Linguistic Diversity: A Global Threat to Informed Consent

Bettye G. Wilson, MEd, RT(R)(CT), ARRT, RDMS, FASRT

     ^*Associate Professor of Medical Imaging and Therapy, Radiologic Sciences Division, The University of Alabama at Birmingham, Alabama.
     Address correspondence to: Bettye G. Wilson, MEd, RT(R)(CT), ARRT, RDMS, FASRT, Associate Professor of Medical Imaging and Therapy, Radiologic Sciences Division, The University of Alabama at Birmingham, Scrushy Building, RMSB 443, 1530 3rd Avenue S, Birmingham, AL 35294. E-mail: wilsonbg@uab.edu.

ABSTRACT 

Cultural diversity is on the rise globally. As individuals from different countries continue to travel and relocate to other countries, it becomes apparent that cultural diversity, especially involving linguistic differences, presents certain challenges. One of those challenges is providing quality healthcare to those whose native dialect is different from that of the majority of healthcare providers called upon to treat them. A major aspect of patient care is communication between patients and their providers. As a leader in healthcare delivery, the United States prides itself in the quality of healthcare received by patients. Delivering quality healthcare and achieving positive outcomes can only be actualized through clear and unimpeded communication.

One of the most essential elements of communication in healthcare is providing patients with the information necessary to make decisions regarding their care, including the decision to provide informed consent for treatment. Informed consent provides patients with all of the information concerning a procedure or treatment, especially if the procedure or treatment has the potential to cause adverse reactions or is potentially harmful or fatal. Linguistic differences between patients and healthcare providers are a growing challenge to informed consent. Not only do these differences create a barrier to patient-provider communication, but they also place providers at increased liability for medical malpractice.

Healthcare providers, including medical imaging technologists and radiation therapists, are ethically and legally bound to ensure that patients are informed about their treatments. Many institutions have undertaken initiatives aimed at lessening the impact of linguistic diversity on patient care. The use of interpreters has increased, bilingual healthcare providers continue to be recruited, courses in different languages are being taught to current employees, and documents (including consent forms) have been translated and printed in different languages. All of these initiatives are steps in the right direction, but questions remain as to how effective they are and if there is a need for more. These are just a couple of the questions that need to be answered to ensure that quality patient care is provided globally while protecting patient rights and lessening the legal liability of healthcare providers.

This continuing education article is designed to provide medical imaging technologists and radiation therapists with information on linguistic diversity and its effect on patient care, particularly informed consent. Terminology associated with diversity is defined, and statistics on linguistic variation and global populations are presented. Different types of patient consent are discussed, with special interest in, and exploration of the elements of informed consent. The ethical and legal implications of failure to obtain informed consent are also introduced. Finally, current initiatives designed to lessen the impact of linguistic diversity on quality patient care will be discussed.

Introduction

The people of the world speak between 5000 and 6000 different languages. Globally, Mandarin Chinese is the most commonly spoken language, followed by Hindi, English, and Spanish.¹ As people move from their native countries to settle in new communities, their native languages move with them. The term globalization is used to describe what is currently happening as more individuals choose to leave their native countries to visit, receive education, work, and permanently reside in other countries.² Several problems may be created when people move from one country to another but speak only their native dialects. Among these issues, one of the most significant is the effect of limited linguistic or cultural understanding on the administration of medical care, and especially on the ability of the patient to provide informed consent.

Linguistic and cultural diversity can create numerous barriers to appropriate and quality healthcare. The inability of patient and provider to communicate creates the potential for serious misunderstanding, apprehension, and mistrust. When trust is broken, the patient may not cooperate with treatment. This may lead to unnecessary or inaccurate tests or diagnoses, longer hospital stays, repeat hospitalizations, and poor adherence to hospital discharge instructions. Patients may not know that they need to have a prescription filled, or they may not be able to follow directions to take medication properly. Translation errors that occur when medical staff have limited foreign language proficiency, or when translation is performed by a patient’s child, can lead to significant and sometimes catastrophic treatment errors.³ Reports on such errors have been published in reputable medical journals, including the New England Journal of Medicine. One New England Journal of Medicine article, titled “Language Barriers to Health Care in the United States,” presents several examples of cases in which inadequate communication caused by a language barrier resulted in tragic consequences.³ In one of the examples, the misinterpretation of 1 word led to the delayed care of a patient and resultant quadriplegia. According to the article, a Spanish-speaking 18-year-old said he felt “intoxicado” before collapsing. Although the patient meant that he felt nauseated, the young man was worked up for a drug overdose for more than 36 hours. The patient remained comatose. Finally his condition was re-evaluated, and he was diagnosed with an intracerebellar hematoma with brain stem compression and a subdural hematoma secondary to a ruptured artery. The patient became a quadriplegic. The hospital was sued, and the patient received a $71 million malpractice settlement. Although this case seems to be at the extreme end of what miscommunication or lack of communication can lead to in medicine, it is quite illustrative of the need for mechanisms to promote communication between those who speak different languages.

Healthcare providers and organizations are increasingly focusing on the difficulties of patient-provider communication. They are addressing this issue because they have little choice—the global population is becoming increasingly diverse. Large groups of migrants now move from one country to another much more easily than in previous generations, resulting in increased linguistic and cultural heterogeneity of regions around the world. In addition to moral or ethical reasons for improving patient-provider communication, there are also compelling legal reasons. Under Title VI of the Civil Rights Act of 1964, medical facilities in the United States that participate in federally funded assistance programs (eg, Medicare and Medicaid) are required to take reasonable steps to ensure that individuals with limited English proficiency are able to participate in programs funded by the United States Department of Health and Human Services (HHS).⁴ To ratify that point, in 1998, the Office for Civil Rights of the HHS issued a memo in regards to Title VI of the Civil Rights Act of 1964. The memo was intended as a reminder that Title VI prohibits discrimination on the basis of national origin, and that persons with limited English proficiency fall under that category.⁵

Before discussing the relationship between linguistic diversity and patient consent, it may be helpful to begin by defining some key concepts. The term diversity refers to the fact or quality of being diverse or different. Linguistics is the study of the nature and structure of human speech (language). Linguistic diversity is therefore the range of different languages that are used within a geographic region. Patient consent is the agreement of a patient to undergo a procedure.

Linguistic Diversity

Discussions of the societal problems caused by increasing diversity usually focus on the diversity of language. However, it should be noted that linguistic diversity is accompanied by significant cultural diversity. These cultural differences include the ways in which medical care is administered in other countries, in addition to medical care expectations of individuals from other cultures. There is a wide range of cultural practices in the ways that physicians interact with patients, including physical distance, eye contact, and touching. In some cultures, most medical decisions are left to the healthcare professional, and the patient may be only minimally informed about the specifics of a medical procedure, including the potential for adverse outcomes. Alternatively, family members may be informed about medical treatment decisions or outcomes before the patient.⁶ Additionally, people from other cultures may identify medical conditions that do not correspond with conventional Western definitions of disease.⁶ When patients from other countries are treated in ways that conflict with their culture, the result is often anxiety, fear, or anger on the part of the patient.

The 2 major languages spoken in the United States are English (spoken by 215 million people) and Spanish (spoken by 28 million).⁷ However, many other languages are spoken by large communities within the United States. Chinese, the third most common language in the United States, is spoken by approximately 2 million people; French is spoken by 1.6 million, and German is spoken by 1.4 million. As a result of globalization, the English language has incorporated words from more than 240 other languages.

Approximately 18% of the US population speaks a language other than English at home.⁸ From a medical perspective, the problem with linguistic diversity is not the number of individuals who speak foreign languages, but the number who seek medical attention and have limited proficiency with the English language (Figure).³ Overall, approximately 8% of the US population has limited English proficiency.⁸ In 9 states, at least 10% of the population has limited English proficiency (Arizona, California, Florida, Hawaii, Nevada, New Jersey, New Mexico, New York, and Texas).⁸ The percentage of the US population that speaks a foreign language in the home and the percentage with limited English proficiency is shown in the Table.

One striking feature of linguistic diversity in America is that there are several relatively isolated communities of people who have limited English proficiency, despite the fact that their families have lived in this country for several generations. An example of this is Hmong, who have immigrated from China, Laos, and other adjacent regions. Currently, there are sizeable communities of the Hmong in Minnesota and California, in addition to smaller communities in several other states. These individuals generally speak Miao-Yao, a language for which many English words and phrases have no linguistic counterparts.⁹ These linguistic barriers have led to the development of isolated Hmong communities.

Informed Consent

In the medical setting, adults are allowed to decide for themselves about what care they feel is appropriate. It is a basic tenet of the American legal and medical systems that an individual whose thought processes are not impaired has the right to determine whether a medical procedure is to be performed.

Several different kinds of consent have been described. The types of consent common to medical imaging are simple consent, informed consent, and inadequate consent.¹⁰ Simple consent occurs when a patient agrees, verbally or by action, to have a procedure performed. It supposes no knowledge of the procedure and only involves obtaining a patient’s permission to perform a procedure. Simple consent is further divided into 2 types: implied and express. Implied consent is not expressly spoken or written. Implied consent usually occurs in emergency situations, when a patient is unable to give consent, using the “reasonable person standard,” to having procedures performed. The reasonable person standard simply means that it is thought that a reasonable person in this emergency situation, if they could decide, would agree to have a procedure performed. It is also implied by the person’s condition, if failure to act on the person's behalf would result in serious harm to the health of the patient, or death. Express consent exists when a patient cooperates to have a procedure performed. For example, express consent would be considered to have been granted if the patient answers when his or her name is called, accompanies the technologist to the radiographic room, and climbs onto the radiographic table.

Informed consent is used in cases where a procedure has the propensity to cause adverse reactions, harm, or fatality. It is the method used whereby patients can agree or disagree to medical intervention or procedures based on information provided by a healthcare professional (should be the physician), regarding the nature and possible consequences of the intervention or procedure. Informed consent must be secured in writing.

Finally, inadequate consent is the opposite of informed consent (and is often called “ignorant consent”). It may sometimes be difficult to distinguish inadequate consent from simple consent if it is not clear what information needs to be provided before consent is assumed. The legal consequence of consent not being obtained is usually battery; when consent is inadequate, the legal charge is usually negligence.

Informed consent is a basic patient right, as described by the American Hospital Association Patient Bill of Rights.¹¹ The goal of informed consent is to ensure that medical interventions serve the best interest of the of the patient. Informed consent must be secured in writing. Patients must indicate in writing that they have understood the nature of the procedure, including contraindications, risks, and possible outcomes. Additionally, they must indicate that all questions have been asked and answered. Patient consent depends critically upon communication. If the healthcare professional administering a treatment or performing a test cannot explain the objectives, alternatives, and risks of a procedure for a particular patient, it is possible that true informed consent will not be obtained, even if there is no linguistic or cultural obstacle to communication between patient and provider.

Obtaining informed consent is an ethical responsibility of healthcare providers. Healthcare practitioners have the ethical responsibilities of beneficence and of nonmaleficence. They also have the ethical responsibility to uphold the Patient Bill of Rights, and to adhere to the specific ethical standards of their profession. Every medical profession has its own set of ethical guidelines and professional standards of conduct under which its practitioners must operate; the concept of patient consent is central to these ethical guidelines.

Medical imaging professionals in the United States who are certified and registered by the American Registry of Radiologic Technologists have the obligation to practice under the American Registry of Radiologic Technologists Standards of Ethics and the included Code of Ethics. Other imaging professionals in the United States, such as those certified and registered by the Nuclear Medicine Technology Certification Board or the American Registry of Diagnostic Medical Sonographers, have similar ethical requirements.

Patient autonomy (the right to self-determination) is a basic legal right. When a patient consents to a medical procedure, that consent grants the healthcare provider the legal right to touch and to treat the patient. No such right to touch or treat the patient is granted in the absence of consent. Failure to obtain informed consent can result in legal consequences, including legal charges related to battery, disclosure, and the failure to uphold a fiduciary relationship. Touching a patient without consent, no matter how benign the motives or the effects of the touch, may be grounds for a legal charge of battery. If the practitioner and patient cannot communicate with one another, then the patient cannot consent to be touched, and battery becomes a potentially serious legal issue. Healthcare providers have a legal responsibility of disclosure: Patients must be informed of and must understand the nature of any treatment that is administered to them.

A fiduciary relationship occurs when 1 person places a special trust or confidence in another person. The person in whom the confidence or trust is placed is legally required to act to ensure the best interests of the other person. The relationship between healthcare professional and patient is considered to be fiduciary in nature; therefore, healthcare providers have a legal responsibility to ensure that procedures are performed in the interest of the patient. One part of ensuring the interests of patients is making an effort to communicate with them about the nature of a medical intervention, so that they are aware of what will happen and to be sure that they consent.

In order to secure informed consent, 2 major criteria must be met. The first requirement is that the individual giving consent must fully understand the nature of the procedure, the risks involved (including any adverse reactions, complications, or side effects), the desired outcomes of the procedure, and the possible alternatives. The requirement that the patient understands the desired outcome can be a complication for medical imaging professionals, who often do not know what the physician ordering the test is expecting to find. Imaging professionals may also be unaware of possible alternatives, which often depend on the findings that the physician anticipates from the procedure.

The second requirement is that the individual giving consent has the legal capacity to do so. The legal capacity to give consent is granted only to 1 of the following: a competent adult; the legal guardian or representative of an incompetent adult; an emancipated, married, or mature minor; a parent or legal guardian of a child; or an individual obligated by the courts. Therefore, it follows that if the patient cannot speak or write the primary language spoken and written by the healthcare provider, then the first requirement for informed consent cannot be met. In addition, although competency is usually considered to mean that the individual is free of mental illness or other difficulties that impair the ability to reason, it also must be considered to include the ability of the patient to speak and understand the language of the provider.

Obtaining informed consent becomes more complicated when the patient possesses only limited English proficiency. Adults with limited English proficiency often bring another adult, or even a child, with them to a medical procedure to translate. This is rarely a satisfactory solution, for several reasons. A child’s vocabulary often does not contain words to describe concepts that the healthcare provider is trying to communicate to the patient. The use of a child as translator is associated with significant risk of medical errors because the child may not have a complete understanding of both languages, and may not understand medical terminology.³ When another adult serves as translator, that person’s English proficiency is often questionable. The companion may have more English language proficiency than the patient, but may still lack the ability to understand or communicate medical information. It also takes a considerable amount of time to communicate with the patient through a translator who is untrained in medical terminology and who is also not necessarily a fluent English speaker. In addition, the provider seeking informed consent cannot be sure that the patient truly understands the consent form even after it is signed. Patients may also be less likely to discuss sensitive or personal information when a child or another adult acts as interpreter. In some cases, a patient may use the services of a translator who has been provided from among the patient’s immigrant community. These individuals often have a high level of English language proficiency, but may still lack an understanding of medical terminology.

Finally, language difficulties often complicate the right of parents to make decisions about their children. Although parents or legal guardians have the right to make treatment decisions for their young children, it is not unusual for a child to have better English language proficiency than his parent or adult guardian. A child is unlikely to have full mastery of 2 languages, especially of medical terminology, and may be unlikely to relay information on sensitive issues, thereby increasing the risk for serious medical errors.¹² Also, the provider may be unable to determine whether the child is accurately conveying information about the procedure to the parent.

Addressing the Issue of Linguistic Diversity

Although linguistic diversity presents significant challenges in the healthcare setting, there are few obvious or generally accepted solutions at present. Interpreter services can clearly improve healthcare outcomes for patients with limited English proficiency. One study of hospitalized patients with limited English proficiency found that 27% of patients who needed translation services and did not have access to them did not understand how to use prescribed medications, compared with only 2% of patients with limited English proficiency for whom translation services were available.¹³ Despite the importance of communication in medical care in general, and specifically in obtaining informed consent, translation services are often unavailable for patients with limited English proficiency. A study of interpreter services in hospital emergency departments found that interpreters were not available for nearly 50% of patients with limited English proficiency, and that 22% of patients said that an interpreter should have been used but was not.¹⁴

Several options are being explored to improve this situation. Healthcare facilities are increasingly using interpreters, including telephone-based interpretation services. Although potentially effective, this approach is also relatively costly. According to the American Medical Association, the costs of medical interpreter services vary from $30 per hour to more than $400 per hour in some locations. These costs often exceed the Medicaid payment for an office visit, which is between $30 and $50 in many states.¹⁵

Healthcare employers have also recently begun to focus increasingly on identifying bilingual/multilingual (or bicultural/multicultural) providers. There is a need for individuals who understand foreign languages and cultures, have healthcare training, and know how to communicate health information to patients. Although the use of multilingual healthcare professionals can clearly be effective, the demand for these individuals far exceeds their supply, and it will be many years before multilingual/multicultural healthcare workers have been recruited in sufficient numbers to provide the level of translation services that are needed.

Another approach is to improve the foreign language training of healthcare professionals. This training would require a considerable effort on the part of employers, and it would be difficult to train healthcare workers to the required degree of language competence in sufficient numbers. An alternative is the use of employee “language banks,” in which employers identify employees who have foreign language skills, and these individuals are called upon for translation assistance when required.

Some healthcare providers use translations of written materials that explain medical procedures for patients who speak foreign languages. The disadvantage of this approach is that the patient has limited ability to ask questions. Written materials are also only helpful when the patient is able to read his or her native language. A wide variety of symbols are often used to assist foreign-language patients in navigating the hospital, clinic, or other healthcare setting. However, these symbols are not adequate for conveying complex information required to obtain informed consent. In addition, multilingual signs for patient navigation in US healthcare facilities are typically in English and Spanish. To be as effective as possible, these signs should be translated into other languages as well.

Professional organizations may need to consider changes to their suggested educational curricula in an attempt to improve language training. The introduction of more stringent foreign language requirements might serve to increase the foreign language competence of future imaging and radiologic technology professionals. It may become a requirement that individuals who are entering the healthcare profession do so with a minimal level of linguistic and cultural competency. At a minimum, the individual contemplating entering a healthcare program should consider taking some foreign language training before admittance to the program or during training. It should be noted that speaking a foreign language does not necessarily solve all problems that are created by differences of culture, although improved linguistic competence may be accompanied by some degree of improved cultural understanding as well. In addition, improving foreign language competence will itself not necessarily improve patient informed consent. Foreign language training for healthcare professionals usually emphasizes words and phrases to direct the patient during treatment: stand up, inhale, exhale, and stay still are some examples. However, it is important that we are able to communicate with patients so that they know what they are consenting to, are able to ask questions, and receive adequate replies about their care. This will require a higher level of linguistic training than is normally achieved by most individuals who take foreign language courses.

Conclusions

There are many reasons why effective communication is important. It helps to build trust and to ensure that the patient understands the course of treatment, can follow directions during an intervention or procedure, and can take required follow-up steps.¹⁶ Communication is also essential to meet the ethical and legal obligations of informed consent. The inability of patients and providers to communicate creates numerous significant obstacles to medical care and is 1 reason for significant disparities in the quality of care between different racial and ethnic groups.¹⁶ Healthcare professionals have an obligation to provide quality healthcare for patients regardless of their cultural background, the languages they speak, or their disease states. The World Health Organization, other health organizations, and professional societies are committed to improving healthcare to populations around the world. One way to meet that commitment is to try to understand and communicate with individuals of different cultures. Providing quality global healthcare will require continued development and refinement of initiatives to improve linguistic and cultural understanding by healthcare providers.

References

1. Park K. The World Almanac and Book of Facts 2003. Mahwah, NJ: World Almanac Books; 2002.

2. Global Policy Forum. Defining Globalization. Available at:. http://www.globalpolicy.org/globaliz/define/index.htm. Accessed August 15, 2006.

3. Flores G. Language barriers to health care in the United States. N Engl J Med. 2006;355:229-231.

4. United States Department of Health and Human Services. Office for Civil Rights

Medicare Certification. Civil Rights Information Request Form. Communication with Persons Who Are Limited English Proficient. Available at: http://www.hhs.gov/ocr/commune.html. Accessed July 31, 2006.

5. United States Department of Health and Human Services. Guidance Memorandum

January 29, 1998. Title VI Prohibition Against National Origin Discrimination--Persons with Limited-English Proficiency. Available at: http://www.hhs.gov/ocr/lepfinal.htm. Accessed August 15, 2006.

6. Trotter RT II. National Health Service Corps Educational Program for Clinical and Community Issues in Primary Care. Cross-Cultural Issues in Primary Care Module. Available at: http://www.amsa.org/pdf/culture.pdf. Accessed August 4, 2006.

7. Census Bureau. Available at: http://www.census.gov/Press-Release/www/releases/archives/census_2000/001406.html. Accessed August 4, 2006.

8. Census Bureau. Available at: http://www.census.gov/prod/2003pubs/c2kbr-29.pdf. Accessed August 3, 2006.

9. Johnson SK. Hmong health beliefs and experiences in the western health care system. J Transcult Nurs. 2002;13:126-132.

10. Wilson BG. Ethics and Basic Law for Medical Imaging Professionals. Philadelphia, Pa: FA Davis Company; 1997.

11. American Hospital Association. A Patient’s Bill of Rights. Available at: http://www.patienttalk.info/AHA-Patient_Bill_of_Rights.htm. Accessed August 3, 2006.

12. Flores G, Laws MB, Mayo SL, et al. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 2003;111:6-14

13. Rukavina M, Andrulis D, Betancourt J. The Access Project. What a difference an interpreter can make: health care experiences of uninsured with limited English proficiency. Press conference: April 25, 2002. Available at: http://www.accessproject.org/downloads/c_LEPstatements.pdf. Accessed August 24, 2006.

14. Baker DW, Parker RM, Williams MV, et al. Use and effectiveness of interpreters in an emergency department. JAMA. 1996;275:783-788.

15. Menon A. Cultural impasse. Available at: http://www.ama-assn.org/ama/pub/category/8877.html. Accessed July 31, 2006.

16. Allhof F, Jarosch J, Matiasek J, et al. Improving Communication -- Improving Care. An Ethical Force Program Consensus Report. Available at: http://www.ama-assn.org/ama1/pub/upload/mm/369/ef_imp_comm.pdf. Accessed July 31, 2006.