- *Department of Philosophy, University of North Florida; Wolfson Children's Hospital, Jacksonville, FL.
- †Division of Medical Humanities/Pediatrics, University of Arkansas for Medical Sciences; Arkansas Children's Hospital, Little Rock, AR.
Drs Hurwitz Swota and Hester have disclosed no financial relationships relevant to this article. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.
There is no strong consensus on what is meant by the concept of “culture.” Anthropologists and behavioral scientists note that it is “an abstraction … , a generalization extrapolated from the specific material products, interactions, or ideations. … We do not, in fact, observe culture; we observe phenomena that we choose to group together and label culture.” (1) As applied to the health-care setting, “Culture defines how health care information is received, how rights and protections are exercised, what is considered to be a health problem, how symptoms and concerns about the problem are expressed, who should provide treatment for the problem, and what type of treatment should be given.” (2) (3) In short, culture is the lens through which one views the world, affecting everything that an individual perceives and does, often at an unconscious level. Although common use often treats the term “culture” as equivalent to “race,” “ethnicity,” or “nationality,” in the more rigorous sense (and the sense in which it is used in this article), this common use is overly constricted. Although looking at issues in “Hispanic” culture or “American” culture may be instructive, it is equally reasonable to discuss “gay and lesbian” culture or “Protestant” culture.
In patient/family-centered care, it is important to understand how family, community, and culture play into the values and interests that affect decision-making for a specific patient. In light of this perspective, “cultural competency” and “sensitivity” have become common buzzwords in society in general and in medicine specifically. (4) Despite the content and implications of some of the existing training material in this area, “competence” and “sensitivity” to cultural aspects of individual lives do not require a comprehensive understanding of selected “cultural” practices and values. It is not simply because a practitioner has memorized a large quantity of information about the cultural practices of various groups that he or she becomes culturally sensitive. Rather, what should be sought is a careful recognition of and willingness to attend to specific culturally influenced attitudes and interests as they are held and expressed by individual patients and families. That is, culturally effective health care “take[s] into account the beliefs, values, actions, customs, and unique health care needs of distinct population groups” but does so to “assess how [if at all] the belief and behaviors of … cultural group[s] affect the patient and family.” (4)
Central to providing culturally effective health care is developing and maintaining good communication skills. Communication between practitioners and patients and families, however, is not without difficulties. The power differential between the physician and patient/family creates an additional obstacle in communication, especially for disempowered persons dealing with “experts.” Explaining complex medical issues to people who often are not well-versed in medical terminology can be laborious. Further, “cultural variations in verbal and nonverbal communication can be a major barrier to effective pediatric care.” (5) When different languages are spoken, these barriers become more pronounced.
One population consistently reporting lower subjective health-care status is deaf and hard-of-hearing persons (for the case presented, we focus on deaf parents who use American Sign Language [ASL] as a first language). (5)(6) The following case highlights the triadic relationship inherent in pediatric health care among patient, clinician, and parents; the difficulties that arise when barriers to communication are present; and the importance of considering the language of the patient and family to provide the best health care. Specifically, this case draws out some of the many complexities that arise in caring for patients when their parental decision-makers are deaf.
FB is a 10-year-old boy who has type 1 diabetes. His primary care physician has been seeing the boy for the past year to help regulate his blood glucose. Because FB is dependent on insulin, his parents are closely involved in his care, but regulating his diabetes has proven difficult. His parents regularly bring him in when his numbers are askew, but his physician has never been comfortable communicating with the parents, who are both deaf. The boy is neither deaf nor hard-of-hearing.
The parents were both born deaf and met in a high school for deaf children. They can read lips but are more comfortable with and prefer ASL. The physician has struggled in communicating with them. His is a fairly new private practice, and for expediency and to save costs, he has only used an ASL interpreter on a few occasions. He often relies on the boy to interpret, rarely speaks directly to the parents, and gives most spoken information and direction to the boy. He also relies on visual aids, hand gestures, and his interpretation of the parents' body language.
The latest visit was precipitated by continued erratic blood glucose readings that were confusing and concerning. The physician also is confused because he has spent several visits reviewing how to care for an insulin-dependent child and what to do with various specific blood glucose values, going so far as to send home carefully written and comprehensive directions.
This case raises many practical and ethical concerns, but our focus is on how cultural issues have a direct impact on patient care. We have purposefully chosen to address culture through the case of a child who has deaf parents (acting as primary decision-makers) to highlight both specific considerations when dealing with deaf decision-makers and general concerns about what it means to demonstrate appropriate cultural sensitivity to provide optimal patient care. The focus on and importance of cultural sensitivity is driven by some of the central precepts of current medical practice, particularly patient/family-centered care. Patient/family-centered care is now a well-established tenet of medical ethics. Such “centering” demands that families (patients) be allowed to participate fully in, and even take the lead on, decision-making (at least as far as appropriate). To allow for full participation, physicians must demonstrate general sensitivity and more specifically cultural sensitivity by:
Creating opportunities for the patient and family to be heard and understood on their terms
Learning about the values of the patient and family and how the family sees or encounters the world
Developing and providing options in light of those values (not necessarily “in agreement with”)
Dealing professionally with disagreements or conflicts (eg, by requesting an ethics consultation or by bringing in a cultural broker)
Participation: More Than Just Consent
Since the 1970s, concern about respecting patient “autonomy” has been paramount, and the practical expression of this respect is the need to obtain “informed consent.” (7) As important and useful as these ethical obligations are, they have several shortcomings. For example, gaining a patient's or family's consent does not guarantee that an ethically appropriate process has occurred. Even more importantly in pediatrics, the concept of “patient autonomy” is difficult to apply because many (if not most) minors are developmentally incapable of acting autonomously. Thus, morally and legally, parents are granted the authority to make decisions for their children. Such authority, in fact, is not an exercise of “autonomy” because parents are making decisions not for themselves but for their children, who themselves are presumed not to have autonomy. (8)(9)
Thus, reliance on “autonomy” alone to ground the ethical basis of patient- and family-centered decision-making seems doomed to failure. Instead, a full sense of the patient's life story, which includes some understanding of the familial, communal, and cultural influences on that story, is necessary to promote adequate participation. (10) In the case of pediatrics, parents necessarily shape much of that story. (11) Therefore, helping parents (and patients, to the extent possible) to become invested in the decision-making process not only demonstrates respect but helps to garner robust informed consent.
In the case presented, it clearly is not enough to rely on the boy to translate for his parents. Such reliance compromises his medical care by making a 10-year-old boy the key communicator in his own care for a complex medical condition. Even if unwittingly, poor communication or use of resources can deny parents the opportunity to participate in their child's medical care. One negative effect of such actions could be a less active role for parents in the care and treatment of their child. This effect is especially problematic in cases of children who have chronic conditions in which the care plans can be complicated and necessarily regimented and necessitate family involvement and support (eg, in administering medications, dosing, influencing diet and nutrition, encouraging exercise, and monitoring of the condition). (12)(13) Further, poor communication can lead to a lack of comfort on both sides, with physicians not engaging with parents and parents delaying or even avoiding bringing their child to the physician because of frustration and increased anxiety over the miscommunications affecting their child's health. This physician's reticence to engage the parents in discussion, coupled with the limited context that a 10-year-old boy can provide, results in the boy not only not receiving culturally effective care but actually receiving substandard health care. (14)
Communicating With Deaf Patients and Surrogates
For those who rely on ASL, English should not necessarily be considered their “first” language. In fact, both the grammar and syntax of ASL is different from that of written and spoken English. This important fact, central to communicating with members of the deaf population, often is unknown or overlooked by health-care practitioners. (15) Deaf patients who use ASL (some deaf or hard-of-hearing patients may read lips or use sign-to-English or some other mode of communication in lieu of ASL) “are the nonEnglish speaking minority at greatest risk for physician-patient miscommunication.” (6)
For example, “ASL communication starts with the main point and then winds down,” contrary to English communication, which “works its way up to the main point and then concludes.” (6) One result of this difference may be that “physicians may believe that communications are finished when deaf patients are still ‘winding down' the conversation. When physicians give treatment recommendations to deaf patients, the patient may ask the same questions multiple times.” (6) If the differences in communication style are not identified and explored, deaf patients may hold a paucity of information, leading to a decision that is not fully informed. At the same time, practitioners would be under the mistaken impression that they have answered all the questions of the patients and families. Deaf patients may feel as if they are being dismissed or slighted in some way if physicians try to end the conversation, believing that patients have finished asking questions, when, in fact, questions still remain unanswered and unasked.
Presumptions may run deep about how communication should occur, both in form and content, and such presumptions may interfere with necessary sensitivity. The physician in the case presentation may be entirely unaware that ASL is not the same as the spoken English he attempts to use through speaking, gestures, body language, and even the boy's interpreting. Had he been aware of the language differences, he might have realized that, among other tools such as written handouts and good Internet sites, engaging a trained interpreter would be the best approach to facilitating good communication.
Use of Interpreters
Although cost-effective and expedient, the use of children as interpreters between physician and parents is a dubious practice at best. (3)(16) Children often lack not only the vocabulary but the experience necessary to convey both the basic information and substantive meaning of that information within the context of the medical encounter. Further, a child is caught between two sets of authority figures: parental and medical. These relationships may cause the child to shape the discussion in ways that he or she considers most appropriate to each authority. All of these factors can lead to significant miscommunication that, in turn, can have negative effects on the child's health care. Further, according to a recommendation from the United States Department of Health and Human Services report entitled “National Standards for Culturally and Linguistically Appropriate Services in Health Care,” “Minor children should never be used as interpreters, nor be allowed to interpret for their parents when they are the patients/consumers.” (16)
Trained interpreters are skilled not only at conveying the meanings of the words, but doing so at levels that patients and families can grasp. Further, they help provide some context, such as the conviction and force behind the messages being sent. (17) Interpreters play a significant and useful role in connecting different cultures through the medium of language. As a result, they have a significant impact on creating a participatory process for patients and families within the health-care setting.
Importance of Inclusion
Essential in creating an environment in which patients and families can participate in the decision-making process is establishing a relationship based on trust. In attempting to foster trust, practitioners need to help patients and families feel comfortable enough to engage in a dialogue and share information. One approach is being careful not to prejudge as foolish or ill-conceived specific cultural practices and beliefs about health care. Specifically, practitioners must solicit information and listen carefully, with an open mind, to the responses. Whether the information gleaned from these encounters is about traditional foods or beverages that are being given to the patient, herbal remedies or salves, or end-of-life rituals, such information, and the fact that patients and families are willing to share it, can prove to be invaluable. For example, a perinatal nurse case manager describes a practice common in Hispanic culture in which a baby who has a sunken fontanelle is held upside down by the feet to “fill” the hole. (3) Instead of deeming such a practice foolish and scoffing at it, clinicians should let the families know that a more effective practice is to “also give the baby lots of water, or human milk, or formula, … [and] make sure that the baby gets lots of liquids.” (3) With such an approach, families are not embarrassed to let practitioners know about their traditional cultural practices. Also, practitioners can make much more informed decisions in caring for their patients and guard against practices that may, in fact, be unsafe for the child. Overall, by approaching families and patients with an open mind and a willingness to understand their pertinent cultural practices and traditions, practitioners set themselves up for a relationship founded on trust and mutual respect that enables family members to participate fully in caring for their loved one.
Although we encourage all physicians to learn what they can about various characteristics and traditions of the many cultures that they may encounter (eg, learning how ASL differs from written and spoken English or how some religious tenets affect end-of-life decisions), such an educational endeavor will not allow the clinician to connect well with all patients and families. Instead (or at least in tandem with other tools), we recommend using some variation of Arthur Kleinman's questions for eliciting “explanatory models”: (18)(19)(20)
What do you call your problem? What name does it have?
What do you think has caused your problem? (cause)
Why do you think it started when it did? (time of onset)
What does your sickness do to you? How does it work? (pathophysiology)
How severe is it? Will it have a short or long course?
What do you fear most about your sickness?
What are the chief problems your sickness has caused for you? (personally, in your family, and at work)
What kind of treatment do you think you should receive?
What are the most important results you hope to receive from the treatment?
The point is not that these exact questions must be asked every time for every encounter and every illness or injury. Instead, such questions indicate clear deference to the patient's and family's authorship, provide them the opportunity to explain their interests and values as they report and understand them, and offer the clinician an opportunity to gain access to such personal and important information.
Another, more simplified, variation of this principle is what has been called the LEARN model offered by Berlin and Fowkes: (21)
Listen with sympathy and empathy to the patient's perception of the problem
Explain your perception of the problem
Acknowledge and discuss differences and similarities
Of course, none of this effort will succeed if the practitioner cannot find an effective method of communication, either through a commonly shared language or through interpreters trained to connect health-care professionals with patients and families and overcome language barriers. To decrease the potential for conflict, it is imperative to identify a successful means of communication at the outset of practitioner/patient/family relationships.
- Angrosino MV
- Bronheim S,
- Sockalingam S
- Swota AH
- 4.↵AAP Committee on Pediatric Workforce. Culturally effective pediatric care: education and training issues. Pediatrics. 1999;103:167–170
- 5.↵AAP Committee on Pediatric Workforce. Ensuring culturally effective pediatric care: implications for education and health policy. Pediatrics. 2004;114:1677–1685
- Beauchamp T,
- Childress J
- Blustein J
- Hester DM
- Hester DM
- Nelson HL,
- Nelson J
- Howitt MJ
- 16.↵United States Department of Health and Human Services. National Standards for Culturally and Linguistically Appropriate Services in Health Care: Final Report. Washington, DC: CPHS Office of Minority Health; 2001. Accessed December 2010at: http://www.omhrc.gov/assets/pdf/checked/finalreport.pdf
- Davis BJ,
- Voegtle KH
- Werth JL Jr.,
- Blevins D,
- Toussaint KL,
- Durham MR
- 19.↵Office of Minority Health. National Standards on Culturally and Linguistically Appropriate Services (CLAS). Washington, DC: United States Department of Health & Human Services. 2007. Accessed December 2010at: http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlID=15
- Kleinman A
- © American Academy of Pediatrics, 2011. All rights reserved.