Abstract
Abstract
A growing percentage of critically ill patients and their families in the United States speak limited English. We present the case of a palliative care consult conducted across language barriers to frame a discussion about the use of interpreters for family meetings, including the evidence for using a professional interpreter, the burden experienced by interpreters involved in end-of-life discussions, potential challenges encountered when conducting a family meeting with an interpreter, and recommended best practices for interpreter use in these settings.
Introduction
Mrs. L's husband, adult daughter, and infant granddaughter are present for the meeting. Her husband speaks Spanish only. Her daughter speaks English fluently. A professional interpreter is called to translate for the meeting, but when she arrives and discovers that Mrs. L's daughter speaks English, she asks the neurologist whether her services are truly needed. It becomes clear that Mrs. L's husband has been relying on their daughter to translate for all previous interactions with the physicians and nurses.
The Growing Need for Language Services in Palliative Care
More than 55 million people in the United States speak a language other than English at home, and more than 24 million people speak limited or no English. 1 The proportion of the population with limited English proficiency (LEP) nearly doubled between 1980 and 2000 and continues to grow.1,2 As linguistic diversity increases in the United States, as well as in countries around the world, the need for trained, certified health care interpreters is on the rise. 3
Perhaps nowhere is this need felt more acutely than in palliative care. The elderly are the fastest growing group of immigrants to the United States, 4 and hospital-based palliative care services are expanding rapidly to public hospitals serving large numbers of immigrants with LEP. 5 Complex, sensitive, and often lengthy discussions about end-of-life issues cannot take place without adequate language services. Yet despite an emphasis in national quality guidelines on providing appropriate language services and culturally-sensitive care near the end of life,6,7 there has been little attention paid to the role of interpreters in palliative care. In this article, we use the case of Mrs. L to frame a discussion about conducting a family meeting with an interpreter, including the evidence for using a professional interpreter, the burden experienced by interpreters involved in end-of-life discussions, potential challenges and recommended best practices for interpreter use in these settings, and areas where future research is needed.
The Benefit of Using a Professional Interpreter for Family Meetings
Overall, language barriers are associated with significant disparities in health care access and quality for patients with LEP.8–11 Multiple studies have documented that use of interpreter services can mitigate these disparities, improving comprehension and clinical outcomes.12,13 Professional interpreters are trained in interpretation and may be available either in person, via video medical interpretation modules, or over the phone. 14 Ad hoc interpreters are not trained, and may include family members, friends, nurses, or other staff with skills in a second language. Patient satisfaction is higher when professional rather than ad hoc interpreters are used in many different clinical settings.15–17 Errors in interpretation, although present in all types of encounters, 18 occur less frequently and may have fewer clinical consequences when trained professional interpreters are used.19,20 In family meetings, the quality of interpretation is particularly important, as key decisions depend on what is said and how it is communicated. 21 Poor quality interpretation can magnify the potential negative impact of cultural misunderstandings.22–24 For example, family members who are unfamiliar with the concept of palliative care may be further confused if the interpreter does not translate the physician's explanation accurately or fails to convey the family members' questions and concerns back to the physician. Furthermore, professional interpreters are trained to protect patient privacy and confidentiality, which may lead families to share more sensitive information. 25
Although ad hoc interpreters use is common in the hospital, 26 there are multiple reasons not to use family members, friends, or untrained staff as interpreters for family meetings. Family members cannot reasonably be expected to interpret for a conversation in which they are also participating in about end-of-life decisions for a loved one. The demands of interpreting can only worsen the significant emotional burden experienced during such times.27–29 Many ad hoc interpreters do not have adequate skills in both languages to interpret for complex medical discussions, and heightened emotions or personal beliefs may further threaten their ability to interpret accurately. For example, a family member may not translate prognostic information because she wants to protect the rest of her family from bad news. Particular caution should be taken to avoid using children as interpreters, as such practice places an unnecessary emotional strain on the child. The use of minors as interpreters is illegal in several states.30–32
Physicians with skills in a second language should not conduct family meetings in that language unless they can communicate like a native speaker. 33 “Getting by” with minimal second language skills is common and may be acceptable in some emergent or straightforward clinical situations, but this practice is problematic for discussions that involve end-of-life issues.25,34 It is difficult enough to communicate about emotionally laden topics and facilitate surrogate decision making in one's primary language.35–37 Even when the physician has native fluency in a second language, other clinicians, staff, or family members who are present at the meeting may not, necessitating an interpreter. Bilingual physicians who attempt to simultaneously lead a meeting and serve as the interpreter risk performing one or both tasks poorly. The stakes are too high in such discussions to accept this risk.
Mrs. L's case brings to light several of these issues. Her daughter is young (although not a minor), caring for her own infant daughter, and likely struggling to understand and come to terms with her mother's critical illness. As the only family member present who speaks English, she has been thrust into the role of spokesperson, translating the updates from the neurology team for her father and her father's questions for the neurology team. Relying on the daughter to interpret may have been acceptable for certain simple interactions—for example, arranging a time for a family meeting–but would not have been appropriate for more complex discussions, such as informed consent for Mrs. L's brain biopsy. 25 Whereas her English is impeccable, it is not clear how well she speaks Spanish, and no one can be sure whether previous interactions have been translated impartially or completely. She may or may not have been made aware by the consulting service that free, professional interpreter services were available to her. The team should thank Mrs. L's daughter for her services and ask the professional interpreter to stay. Mrs. L's daughter should be encouraged to accept the assistance of a professional interpreter so that she can focus on her role as a family member (see Table 1 for specific words to say). In the unusual scenario where a family member insists on interpreting, a professional interpreter can still stay for the meeting to ensure accurate interpretation, given medico-legal and ethical concerns. 25
Source: Adapted from Smith et al. 23
The Impact on Interpreters Involved in Family Meetings
Physicians often neglect to consider how difficult or emotionally-laden encounters impact interpreters. In qualitative studies, professional interpreters describe several challenges confronted when interpreting for such discussions.38,39 Many interpreters struggle with how to manage their own emotions when interpreting bad news. They often experience a tension between providing strict interpretation versus acting as a cultural broker or offering additional support for patients and families. Some interpreters also describe discomfort with the style of physician communication in family meetings and may feel abandoned or abused by clinicians. Interpreters who have not been warned that an encounter will involve bad news or end-of-life issues may be ill-prepared and unclear about their expected role. Negative experiences when interpreting for family meetings may lead interpreters to avoid such assignments in the future. Although palliative care teams frequently meet to debrief after emotionally difficult encounters, interpreters seldom have a forum or place to do so. 39 Including interpreters as a member of the health care team whenever possible and taking the time to discuss expectations and exchange impressions before and after a family meeting can decrease the burden experienced by interpreters while also providing valuable insights into the values and cultural beliefs of patients and their families.
In the case of Mrs. L, the interpreter likely did not grasp the complexity of the situation before asking if her services were truly needed. A brief introduction to Mrs. L's clinical case and family structure may have helped to alleviate confusion and clarify the interpreter's expected role. Including the interpreter in team discussions after the family meeting may have led to additional information about the family's expectations and degree of comfort with decision making, unearthed potential sources of misunderstanding or mistrust, and provided the interpreter with the chance to discuss her own emotions and concerns. Pre-meeting and debriefing would also be an opportunity to ask for the interpreter's guidance in explaining key concepts such as “withdrawal of life sustaining treatment” or “comfort care.”
Potential Challenges and Recommended Best Practices
Family meetings conducted across language barriers can be difficult even with the assistance of a trained, professional interpreter. Most patients prefer to have a doctor who speaks their language. 40 Such preferences, while not well-studied in palliative care settings, are likely to be even stronger when emotional, end-of-life issues are discussed. Families may feel hesitant to reveal their true feelings or to ask questions with an interpreter present. In a study of primary care encounters, patients requiring an interpreter were less likely than English-speaking patients to make comments about symptoms, thoughts, or feelings, and the comments they did make were more likely to be ignored by their physician. 41 In a study of family meetings in the intensive care unit, physicians made fewer expressions of support for families in language discordant meetings conducted through an interpreter than in language concordant meetings. 42 Even professional interpreters may have difficulty translating the complex concepts that arise frequently in palliative care. Alterations in interpretation still occur with professional interpreters, 18 and longer and more complex turns of speech may result in more interpreter errors. 3
It is important for physicians conducting family meetings with an interpreter to be aware of such challenges. Few providers receive instruction in how to work with interpreters, and such training is particularly rare at institutions where the prevalence of patients with LEP is lower. 43 Based on a limited body of research and expert opinion, we have assembled a list of recommended best practices when conducting language-discordant family meetings. For each practice, we have listed phrases that providers may use when talking with interpreters or families. (See Table 1.)
Areas for Future Research
Key questions about the quality, comparative effectiveness, and costs of interpretation in palliative care remain unanswered. How common are interpreted discussions in palliative care? How does the quality of interpreted family meetings compare with language-concordant family meetings? What additional resources are required for interpreted discussions in palliative care (e.g., clinician time, interpreter time, interpretation equipment, costs)? What type of interpretation works best in palliative care (e.g., in-person, over the telephone, via video module)? Are there certain situations in which only in-person interpretation is acceptable? How are interpreters able to translate key concepts such as “hospice” and “comfort care”? What specific types of interpreter and provider training are most needed? How do interpreters' experiences and training impact the quality of the interpretation they provide in palliative care? And what is the impact of interpreting for palliative care discussions on interpreters' job satisfaction? More work is needed to answer these questions, with the goal of developing and evaluating targeted interventions to improve interpretation in palliative care.
Ultimately, our attention to the role of interpreters in palliative care is a question of how best to provide care that is compassionate, equitable, and culturally sensitive for a growing population of patients such as Mrs. L and their families who face critical illness and decisions about life-sustaining treatment while navigating language barriers. Considering the benefit of using a professional interpreter for family meetings, the potential impact on interpreters involved in these types of encounters, common challenges, and recommended techniques for working with interpreters, we synthesize available evidence and expert recommendations while highlighting unanswered questions and areas for needed future research.
Footnotes
Acknowledgments
Dr. Schenker was supported by a Junior Faculty Career Development Award from the National Palliative Care Research Center. Dr. Fernandez was supported by an Arnold P. Gold Foundation Professorship.
Author Disclosure Statement
No competing financial interests exist.
