Confronting a Fetal Abnormality: Reflections by Doha Raik Hamza
We are presented in this case with a classical confrontation
between Western medical ethics and Muslim culture. The interaction
described in this case study is unfortunately common between
clinicians and Muslim families. The case highlights two important
issues when it comes to providing care to Muslim patients: informed
consent and the use of family members as interpreters.
From the moment the family senses something is terribly wrong
with the long anticipated baby, they insist on shielding the
patient from the bad news for fear of its harmful impact. Dr.
Fox, on the other hand, is a firm believer in Mrs. Ansari's
right to know what is wrong with her baby. Hence he reluctantly
talks to the husband first, then single-handedly and in a dramatic
scene decides to inform the patient of the grave situation,
after interrupting her prayer.
It is important to note that the notion of "One does not
tell bad news, period" is as essential to Muslims who embrace
it as is the notion of "Every patient has a right to know"
to many health care practitioners in U.S. clinical settings.
That is why this clash is quite severe: It is a clash between
what we as humans have deemed to be basic assumptions, i.e.
unequivocal truths of life that are rarely challenged, if ever.
But what could have been a more amicable resolution to two
seemingly contradictory courses of actions? I believe clinicians
have to come to terms with the fact that "the patient's
right not to know" is as valid as "the patient's
right to know." In the case scenario, we only need to ascertain
Mrs. Ansari's voluntary consent to her right not to know.
One is especially frustrated by Dr. Fox's attitude and insistence
on "fixing" the situation, totally neglecting that:
- After being discharged, Mrs. Ansari will continue to live
within her culture and interact with her family.
- Dr. Fox may not even remember Mrs. Ansari's name six months
from the incident.
- If Mr. Ansari were in a similar situation himself, Mrs. Ansari
would probably try to shield the grave news from her husband
in an effort to avoid any harmful emotional impact.
In addition to neglecting the patient's right not to know as
an aspect of her informed consent, Dr. Fox extensively relies
on family interpreters. He does this despite the presence of
several warning signs, such as Mrs. Ansari's and her family's
limited English, and the nature of the news that Dr. Fox intends
to relay to the family. Where language is limited, the use of
family interpreters is advantageous when it comes to ascertaining
simple requests such as whether the patient is having pain or
not. It becomes risky, however, when it comes to relaying grave
news for the following reasons:
- Naturally, family interpreters are emotionally involved
with the patient. For the purpose of ascertaining the patient's
informed consent, they therefore may not be the most accurate
or reliable.
- Medical interpreting requires being familiar with medical
terminology. This may not be the case for many family interpreters.
This is especially true for those who may not have had formal
training in the English language-such as immigrants-or in
the language they try to interpret. This latter situation
is often true of immigrants' children who tend to learn their
parents' language informally, as they speak it at home, and
who thus usually have limited vocabulary.
- In this case, Dr. Fox creates an unneeded tension between
the Ansari family and Mrs. Ansari's friend by asking her to
translate the grave news. While Dr. Fox continues to see patients,
Mrs. Ansari, her family, and her friend will continue to deal
with the ramifications of his decision.
It is important to note here that we cannot describe the behavior
of Mrs. Ansari and her family as "typical Muslim"
behavior. Muslims differ in their level of adherence to Islamic
teachings, in their degree of acculturation to the societies
in which they live, in their levels of education, and in myriad
other ways that make the experience of each Muslim patient and
his/her family unique and shaped by very particular life experiences.
A culturally astute clinician cannot be expected to know every
detail about Muslim cultures, details that sometimes influence
the way people behave to a greater extent than the religion
of Islam itself. It is helpful then to equip oneself with some
practical tools and attitudes that could be useful in navigating
crucial issues with the Muslim patient-or any patient for that
matter:
- The health-care team must show flexibility and exhibit willingness
to learn and understand, in the best possible sense, the cultural
and religious values that are shaping the patient's and his/her
family's behavior.
- Health-care personnel must be keenly aware of their
own cultural values in order to avoid imposing their own views
of health and decision making on their patients. Dr. Fox's
sincerely-intentioned effort gently but firmly to relay to
Mrs. Ansari the grave news likely stems in part from his wish
to be informed of his own medical condition should he ever
find himself in a similar situation.
- The clinician needs to rely more frequently on the health
care team personnel and mobilize resources that can be of
great value specifically when dealing with critical issues
like those in the Ansari case. A social worker might have
been a very helpful resource here for navigating the dynamics
of decision making within this family and for understanding
the cultural values that are shaping family members' behavior.
Interpreter services may not have had a Dari/Farsi speaking
person but might have arranged a phone conversation or an
interpreter specifically to come speak to Mrs. Ansari and
her family. A chaplain might have been of assistance in explaining
simple matters, such as the fact that the Islamic prayer takes
only five minutes to perform, or that an Imam ought to be
called since the family seems quite devout and might need
religious guidance with such a crucial decision.
- Little actions can culminate in a mega impact. What experience
teaches us is that an outcry like the one at the end of this
case is rarely the product of a single event, but rather the
natural result of many small actions that went wrong. It is
this series of small actions that makes the reaction of some
patients and/or their family members so powerful. First Dr.
Fox relies heavily on the patient and her family for interpretation;
then he refuses to wait until the husband does a five minute
prayer; then he relays some very heavy news to the husband,
interrupts the patient while she is praying and gives one
final blow by insisting on flatly telling the patient all
the details. He does this only to face a response from the
patient and her family for which hospital security might be
needed. Had the doctor shown more accommodation of the simple
and reasonable requests from the patient and/or her family
from the beginning, he might have received a more agreeable
response. Minimally, he might have been able to discuss calmly
what could be done, what would be in the patient's best interest,
and which measures she could voluntarily agree to.
The case study again teaches us that cultural competency is
not about remaining in one's own comfort zone and merely applying
empty rules and regulations. Rather, it is about a creative
interaction between human beings of differing experiences and
backgrounds that could, if honestly sought and correctly harnessed,
become an exhilarating learning experience for all involved.
Return
to the case
Introduction
to Culturally Competent Care
Introduction
to Culturally Competent Care for Muslim Patients
Doha Raik Hamza served as the Muslim volunteer coordinator
at the Spiritual Care Services at Stanford Hospital from 2003-2007.
January 2008
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