Submitted by Amelia Barwise
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
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.