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June 10, 2019

Shared Decision Making with patients who have Limited English Proficiency

By Kirsten Fleming

Submitted by Amelia Barwise

The importance of shared decision making (SDM) is widely recognized and its practice is encouraged. However, some people face major challenges as they are invited to participate in SDM, and may not recognize or understand the concept of SDM within healthcare. There is a limited amount of literature about SDM in patients who have limited English proficiency (LEP) – defined as “not speaking English as a primary language and potentially having a limited ability to read, speak, write, or understand English.” We do know, however, that older age, poor health literacy, and language barriers are obstacles to using SDM. LEP often occurs together with low health literacy and cultural obstacles; this triad is aptly referred to as the “triple threat.”

The basic tenets of SDM – sharing of information and preferences, consensus building and reaching agreement – may be foreign to many. Here, we examine the steps involved in SDM, and clarify the potential issues that may arise in the context of people with LEP.

Process of information sharing

Those with LEP may have a different worldview with cultural norms that diverge substantially from Western norms. Some people with LEP believe, either for faith-based or cultural reasons, in non-disclosure and deliberately hide a poor diagnosis, poor prognosis, and alternative treatment options from their loved ones who are patients. This is not done with ill-intent but to protect their loved ones from experiencing potential hopelessness and depression from learning of impending death or a non-curative condition. LEP patients may also be more likely to use alternative therapies and be reluctant to share this information as they sense that clinicians may not approve. Those with LEP are more likely to experience bias or perceive they have experienced discrimination, and therefore have less trust in their clinicians inhibiting information sharing. Clinicians in turn may share less information with those who have LEP due to a variety of factors including lack of time, interpreter availability, and concerns about comprehension.

Deliberation and Decision making

The importance of family in decision making among those with LEP is also key, with large groups of relatives often involved in decisions that for most US families would involve a patient acting alone or with a surrogate or with very close family members only. The collectivist approach to making decisions is at risk of impeding deliberation and shared decision making as the needs, preferences, and understanding of what is best for the patient as voiced by the patient may get crowded out by the many voices wanting to be heard.

Decision making models

The US promotes patient autonomy (with designated surrogates as needed) as vital in all decision making and a driver of shared decision making, while other cultures support a paternalistic model with the clinicians considered expert and driving the decision making process.

Decision aids developed for specific populations may help bridge the gap between inadequate communication and improved decision making. Decision aids adapted from English to other languages require more than translation to ensure their usability and effectiveness; an enormous challenge. Interpreters will need to be involved in the process of developing and implementing tools as they will be central to their uptake and effectiveness in practice. There remain huge challenges to supporting and measuring SDM even with isolated language barriers unrelated to other health literacy and cultural differences.

The purpose of this commentary is not to stereotype groups into those “capable” of SDM and those that are not. The purpose of this commentary is to draw attention to a wider range of cultural approaches to decision making in healthcare. The healthcare team should assess each patient’s interest in being part of a SDM process. For some with LEP, SDM will appeal and help them make informed and meaningful decisions about their healthcare. For others it will be a baffling and potentially distressing encounter. We must not coerce patients into “complying” with Western decision-making approaches when seeking care. In respecting patients, we need to consider flexible and culturally adept decision-making processes that acknowledge the fundamental role family and other factors play in clinical decision making.

Clinicians should be mindful of the other more pressing barriers to decision making that exist for those with LEP and accept other potentially unfamiliar approaches to providing compassionate and culturally sensitive care. It may help to exercise some cultural humility, accepting decisions that clash with usual expectations and being skeptical of SDM as the preferred way to reach decisions with patients. For some with LEP there are limits to the practical use of SDM and requiring them to conform to SDM is unrealistic and may be counter-productive and uncaring.

Amelia Barwise is an assistant Professor of Medicine within the Division of Pulmonary and Critical Care Medicine at Mayo Clinic. She is currently working on her PhD focused on end of life care among patients with limited English proficiency.

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