By Kathryn DeCarli, MD, MBE, and Jonathan Marron, MD
Ana S is an 84-year-old woman with newly diagnosed clinical stage IV ovarian cancer metastatic to liver who presents for her first visit to the outpatient medical oncology clinic. Her primary language is Portuguese, and she speaks very little English. She moved to the United States 20 years ago from Brazil and lives with her son, Michael, who accompanies her to her appointment and speaks both Portuguese and English. Ana’s performance status is ECOG 2. She is ambulatory for short distances with a cane, able to feed and dress herself, and relies on Michael and her grandchildren for help with bathing and food preparation.
Her oncologist, Dr. M, enters the exam room and introduces herself to Ana and Michael via a Portuguese language line interpreter using the clinic’s standard process. Ana smiles and nods. Michael addresses Dr. M in English, saying, “The interpreter won’t be necessary, doctor. I will translate for my mom.” Dr. M turns to Ana and begins to ask if this is what she wants. Michael interjects, “Please, doctor. She lives with me and I take her to all her medical appointments. She is so intimidated by doctors because she doesn’t speak English and she doesn’t feel well. She only trusts me. She will be more comfortable this way.”
Dr. M pauses. She had planned to spend today’s visit building a relationship with her new patient, exploring the role for geriatric oncology evaluation, discussing Ana’s goals and values, and presenting treatment options including best supportive care. This conversation would be challenging for any patient interaction, even if all parties spoke the same primary language, and raises ethical concerns. One framework for decision making in medical ethics places actions on a spectrum of duty and permissibility. We will explore what actions Dr. M must, ought, or should take to act ethically, and what actions she may acceptably take. Ought she require Ana and Michael to use services of the professional interpreter? May she proceed without one?
This vignette raises important ethical considerations regarding patient autonomy, cultural awareness, and respect. While these issues apply to all domains of medicine, oncology providers may feel heightened distress in circumstances such as those outlined in the vignette. Discussions about cancer prognosis, treatment options, and goals of care require clear bidirectional communication between the patient (and/or their surrogate) and their oncology team. Professional medical interpreters are trained to support transparent, accurate, and culturally sensitive communication.1 Cancer carries particular emotional weight and stigma in many cultures.
In this column we will present an overview of the spoken language medical interpretation landscape, identify the benefits of professional interpretation, explore reasons why patients and their families might decline interpreter services, and discuss ethical implications of service declination. (Interpretation and translation services for patients who are deaf or have hearing loss are outside the scope of this article due to patient’s varying needs and nuances in non-spoken language. There is a distinct body of literature on this topic and a separate certification process for medical interpretation. For further reading, please visit rid.org/rid-certification-overview or nationaldeafcenter.org/interpreting.)
Background of medical interpretation
Verbal interpretation of health care encounters is established as a right for U.S. patients with limited English proficiency (LEP).2 Except in urgent circumstances, such interpretation should be provided by a trained medical interpreter who meets competencies set forth by the U.S. Department of Health and Human Services (HHS): knowledge of specialized terminology, adherence to principles of ethics, and ability to offer accurate, effective, and impartial interpretation.1 The Joint Commission (JCAHO) also lays forth competencies for interpreters.3 While HHS does not require specific certification to qualify a medical interpreter, major efforts have advanced the standardization of medical interpreter training. National coalitions have collaborated over the past 20 years to promote valid, credible, inclusive, and transparent certification programs for medical interpreters.4 Training requirements include a high school diploma, 40 hours of qualified training, and proof of proficiency in English and another primary language. Certification exams for spoken languages are offered through the Certification Commission for Healthcare Interpreters (CCHI) or the National Council on Interpreting in Health Care (NCIHC).5
HHS stipulates “no individual with LEP should be required to accept language assistance services, consistent with an individual’s right to self-determination.”1 Further, when a patient with LEP “specifically requests that the accompanying adult interpret or facilitate communication, the accompanying adult agrees to provide such assistance, and reliance on that adult for such assistance is appropriate under the circumstances,” HHS permits reliance on a family member to interpret.6 In practice, these conditions are difficult to satisfy objectively. Notably, there is wide consensus that children and teenagers should never be expected to interpret on behalf of their relatives, even when a patient asks for this to be done.7 Applying this to our case, if Ana brought her teenage grandson to her visit and asked him to interpret, it would be critical to offer a professional interpreter.
Benefits of interpretation
Professional medical interpretation services have many benefits to patients, families, providers, and institutions, including:
- Accuracy. Medical interpreters are trained to deliver the oncology team’s message word for word, without editorial or summary. This promotes communication as directly as possible between Dr. M and Ana without alterations in meaning. Though Michael appears to have the best intentions, when he interprets, there is no way for Dr. M to know whether her message and Ana’s responses are being conveyed with fidelity.
- Transparency. While family members can and do often respect their loved ones’ autonomy, some may filter what is interpreted in order to protect the patient from bad news about their cancer. If Ana wants to be shielded from information such as prognosis, Dr. M ought to respect her autonomy. Professional interpretation helps ensure this decision is made by Ana, and not by Michael on her behalf.
- Cultural sensitivity. Professional medical interpreters are trained to deliver information in a way that is acceptable within cultural norms. While Michael is also likely to do this, it is important to note that the interpreter can help Dr. M connect with Ana across cultural differences.
- Reduction in medical errors. Professional medical interpreters are less likely to make clinical errors in interpretation than lay interpreters.8 This supports truly informed consent for cancer-directed therapies, reliability of medication lists and doses, and full understanding of Ana’s symptom reporting to guide Dr. M’s treatment plan.
- Family-centeredness. With the interpreter present, Michael can focus on his role as Ana’s son and primary caregiver and not on the details of interpretation.
Declination of services
Patients and families may decline qualified interpreter services offered by their oncology provider for many reasons, including:
- Personal comfort. As Michael points out in the vignette, Ana does not feel well and she is intimidated by the U.S. medical system. Patients who find doctor visits anxiety-provoking may find comfort in personal interpretation by someone they know and trust.
- Regional dialects. Some languages have regional dialects. For example, Ana speaks Brazilian Portuguese, and she is likely not comfortable communicating with an interpreter who speaks Cape Verdean Portuguese. Ensuring an appropriate match is paramount.
- Personal differences. Patients may prefer interactions with people of a certain sex, presenting gender, skin tone, or ethnic background. Such preferences could be discriminatory or could be embedded in cultural history. For example, the Ahmaric language is spoken by Ethiopians of different ethnic groups and some Ahmaric-speaking patients may not be comfortable with an Ahmaric interpreter from an ethnic group outside of their own.9 Patients and families might not explain these preferences to their oncology provider.
- Sense of inadequacy. Patients and families may feel embarrassed or ashamed that they are unable to communicate fluently in English. While Ana has not expressed this sentiment in our case, Michael could be driven by a desire to save her the embarrassment of relying on a professional interpreter. The oncology team should normalize medical interpretation as something that is offered to everyone with LEP. Providers can describe interpretation as an important tool to reduce medical errors and to permit family members to focus on their personal relationship with the patient, without judgment or devaluation.
- Confidentiality concerns. Patients who identify with a cultural or language group in their larger community are likely to share social connections with in-person medical interpreters working at their oncologist’s office. They may fear disclosure of their cancer diagnosis or treatment details, which carry stigma in many cultures. Ana and Michael may have friends or even extended family members who are employed by the hospital as interpreters, and not wish them to know about Ana’s cancer. Educating patients and their families about interpreter confidentiality may help allay these concerns.
- Challenges of remote interpretation. For many patients in the U.S., in-person interpreters are not reliably available in their preferred language at the location where they receive their oncology care. Phone and video interpreters, while useful, may be challenging to interact with due to technology barriers, decreased hearing ability, and absence of non-verbal communication. If a patient declines interpretation because of virtual formatting, efforts to ease these challenges should include positioning the video interpreter at eye level, adequate volume, and seeking an in-person interpreter. If possible, Dr. M could ask Ana and Michael if they prefer an in-person interpreter over the language line.
- Cultural norms. Medical interpreters are qualified to deliver an accurate interpretation of the oncologist’s words. When a provider speaks openly about cancer or prognosis, it may be jarring for a patient and their family to hear bad news in their preferred language in a fashion unsupported by their cultural norms. Explaining the role of the interpreter to accurately interpret the provider’s words in a culturally appropriate way without altering their meaning may help set expectations. The provider can respect cultural differences by asking the patient via a medical interpreter how they wish to receive serious medical information.
- Negative experience with a prior interpreter encounter. A patient or their family member may have had a negative experience in the past with an interpreter for any of the reasons above. For example, perhaps Ana’s sister relied on an interpreter in the past who spoke a dialect different than her own and told Ana how confusing it was. Delving into the reasons for declining an interpreter may reveal a problem that can be addressed for a more positive experience moving forward.
Using the spectrum of ethical duty and permissibility outlined above, a normative ethics approach to this vignette can help us answer what next steps Dr. M ought to take and what steps she may take when Michael objects to use of the professional interpreter. We will explore possible barriers here and the concepts of patient autonomy, beneficence, and non-maleficence before suggesting a conclusion and course of action for Dr. M.
A red flag in this vignette is that Michael objects to Dr. M even asking Ana about her interpreter preferences with the aid of a professional interpreter. While Michael has expressed nothing but good intentions, he has impeded Ana’s opportunity to express her preferences directly to Dr. M. Patients may be uncomfortable asking for a professional interpreter in the presence of their loved ones, and so this is best done with Michael outside the room. This can be normalized in the same way family members are asked to step out of the room for sensitive social history taking, trauma-informed physical exams, and sterile medical procedures. Hearing from Ana directly about her communication preferences respects her autonomy.
Fidelity of translation is another major concern with respect to patient autonomy. When Michael interprets, there is no way for Dr. M to verify that Ana’s values and decisions are being accurately represented. Similarly, Dr. M cannot be sure Ana is hearing all the nuances of her condition and all the available treatment options presented. Inaccurate interpretation in both directions, from physician to patient and from patient to physician, could jeopardize effective communication. This presents a barrier to truly informed consent and raises the possibility of medical decisions made on inaccurate information.
NCIHC asserts that interpreters’ ability to detach themselves from the content of a message is paramount to maintain fidelity of translation.10 It is unreasonable to expect a patient’s family member to maintain emotional detachment while hearing and interpreting information about a loved one’s cancer diagnosis, pain assessment, treatment options, or goals of care. A professional interpreter can also fulfill beneficence towards Michael by providing him space to serve as Ana’s son and caregiver, rather than as her interpreter.
Recognizing that most family members are acting on behalf of their loved one’s best interest, we must acknowledge the potential for conflicts of interest. When performing two roles as a family member and a medical interpreter, Michael may have difficulty remaining neutral and passive, give his own version of events, find it difficult to share bad news, and/or distort Dr. M’s message for emotional or cultural reasons.7 Use of a professional interpreter circumvents these conflicts, acts in Ana’s best interest, and upholds the principles of beneficence and non-maleficence. Importantly, this situation may also arise in the care of English-speaking patients who have developmental disabilities, have hearing loss and are unable or choose not to utilize auditory devices, are deaf and do not have an interpreter present, or are deferential to an accompanying family member.
Conclusion and Recommendations
There is regulatory and ethical precedent that Dr. M must offer a qualified interpreter and must ensure Ana understands in Portuguese what services are being offered. If Ana favors Michael as her personal interpreter, it is prudent to explain the special training and benefits of professional interpreters. If Ana declines offered services, Dr. M may ethically respect this choice and document their conversation in the medical record.
Applied ethics, putting these principles into practice, can be messy. Some institutions require a waiver of interpreter services. However, such waivers are often printed in English. It is unclear how best to assess literacy and to translate these forms to a patient who is declining an interpreter. Other institutions do not allow patients to waive interpreter services and require an interpreter to be present for all visits. Still others insist the interpreter be present for at least the first visit with the medical team to assess if communication is going well. There is an ethical imperative to train and recruit more oncologists who are fluent in languages other than English. The U.S. oncology workforce is not representative of the patients we serve. For example, while approximately 19% of the U.S. population identifies as Hispanic,11only 3% of U.S. medical oncologists do.12
Ultimately, Dr. M communicated directly with Ana via professional interpreter on her first visit and asked her about her preferences moving forward. Ana shared that she preferred her son over the professional interpreter. Moving forward, Dr. M will partner with Michael as Ana’s primary caregiver and the interpreter of her voice, placing Ana as much as possible at the center of her own care.
Dr. DeCarli is a fellow in medical oncology and palliative care at The Warren Alpert Medical School of Brown University in Providence, RI. She holds a master of bioethics degree from The University of Pennsylvania and serves on the ethics committee at Rhode Island Hospital. Her professional interests include thoracic oncology and the integration of early supportive oncology into clinical practice.
Dr. Marron is a pediatric oncologist, bioethicist, health services researcher, and educator at Boston Children's Hospital and the Dana-Farber Cancer Institute. He also serves as director of Clinical Ethics at the Harvard Medical School Center for Bioethics. Dr. Marron's research focuses on the intersection of ethics, decision-making, and communication, with a particular interest in pediatric cancer genomic sequencing and other advanced and emerging technologies. Follow him on Twitter at @JonMarronMD.
- U.S. Department of Health and Human Services. Nondiscrimination in health programs and activities: final rule. Fed Regist. 2016;81:31375-473.
- Basu G, Costa VP, Jain P. Clinicians' Obligations to Use Qualified Medical Interpreters When Caring for Patients with Limited English Proficiency. AMA J Ethics. 2017;19:245-52.
- The Joint Commission. Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010.
- Certification Commission for Healthcare Interpreters (CCHI). The History of Healthcare Interpreter Certification. 2018.
- National Council on Interpreting in Healthcare (NCIHC). National Certification for Healthcare Interpreters. 2022.
- U.S. Department of Health and Human Services. Technical Assistance for Medicare Providers and Applicants: Communications With Persons Who Are Limited English Proficient. Jul 26, 2013.
- Rimmer A. Can patients use family members as non-professional interpreters in consultations? BMJ. 2020;368:m447.
- Gany FM, Gonzalez CJ, Basu G, et al. Reducing clinical errors in cancer education: interpreter training. J Cancer Educ. 2010;25:560-4.
- Carteret M. Overcoming Language Barriers and Resistance to Interpreter Services. Dimensions of Culture. Dec 8, 2014.
- National Council on Interpreting in Healthcare. A National Code of Ethics for Interpreters in Health Care. Working Papers Series. July 2004.
- American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2018-2020. Atlanta: American Cancer Society, Inc. 2018.
- Towle E. Demographics of the US Oncology Workforce. J Oncol Pract. 2016;12:99.