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Dead wrong! the ethics of culturally competent care.

In 2015, 13.2% of the U.S. population was foreign born, and 21% of households spoke a language other than English (U.S. Census Bureau, 2015). Cultural competence is the ability of healthcare systems to tailor care delivery based on patients' values, beliefs, and behaviors (Gray, 2016). Culture describes the set of activities, values, and experiences that surround the involved people. Persons outside a cultural group evaluate that group based on the norms of their own culture. With considerable cultural diversity in the United States, Gray noted differences in values and beliefs are very likely to impact healthcare delivery. Cultural competence in healthcare delivery involves the provider's insight into personal values and beliefs, and the ability to care for patients with different values and beliefs. Respecting alternative cultural beliefs is imperative, but respect does not require agreement with alternative beliefs (Jonsen, Siegler, & Winslade, 2015).

The culture of health care and medicine espouses views on how things should be done the normal and correct way. Because medical knowledge is understood to be real and correct knowledge, people who disagree with the medical view may be labeled noncompliant. Many people disagree with the medical view and thus providers must recognize the medical view may not be valid and correct for all patients (Gray, 2016). An in-depth exploration of culture follows from the perspective of a case in which a patient's ability to exercise autonomy was impacted by her cultural beliefs.

The Case

Ms. C., age 39, was diagnosed with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome approximately 5 years ago. She is admitted with worsening renal function and pneumocystis pneumonia. Her last admission was less than 2 months ago, when she experienced central nervous system toxicity from her disease. She adheres inconsistently to the medication regimen. She is at risk for multi-system organ failure, and her capacity to participate in medical decision making is expected to deteriorate.

As an inpatient, she intermittently refuses medical treatments without recognition of or belief in associated risk and potential harm. As an outpatient, she also has had inconsistent medication regimen adherence. Ms. C. speaks Haitian Creole with very limited English and has very limited health literacy. During her treatment, a variety of interpreting methods have been used. A trained medical interpreter from the staff was used toward the end of her hospitalization.

Ms. C. lives with her mother; she has never married and does not have children. Based on the state HealthCare Decisions Act, Ms. C.'s mother would assume decision-making responsibility if the patient loses capacity (State of Delaware, n.d.). Providers have had difficulty determining her capacity for making medical decisions because of the language barrier as well as cultural beliefs incongruent with medical science. She has insinuated she would be ostracized and harmed if family members learned of her HIV diagnosis, and has refused to inform them. Consistent with prevalent beliefs about HIV in Haiti (Brawner, Alexander, Fannin, Baker, & Davis, 2016), she identifies her disease as a source of shame. She has returned to Haiti periodically to receive traditional therapies.

An ethics consult has been requested because of concern for the patient's mental condition. In discussions held with the assistance of a telephonic interpreter, the patient reported "speaking to God" and rejected the assumption treatment plans in the hospital would cure her. She also expressed a desire to leave the hospital to seek care in Haiti, stating only the "medicine" she could receive there would cure her true problem. Psychiatric services also were consulted, and the provider recognized the possible influence of cultural issues on the patient's decisional capacity.

Cultural and Linguistic Barriers

Culture impacts health in a significant, direct, yet unpredictable manner. Culture in the context of health care was defined by the U.S. Department of Health and Human Services, Office of Minority Health (2000), as "integrated patters of human behavior that include the language, thoughts, communications, actions, customs, beliefs, values and institutions of racial, ethnic, religious or social groups" (p. 8). Additional dimensions include socioeconomic status, degree of acculturation, experience with racism, physical and mental ability, sexual orientation, health literacy, and other factors that influence individuals' health behaviors (Betancourt, Green, Carrillo, & Ananeh-Firempong, 2003; Leavitt, 2010). Culture impacts how patients understand their bodies, think about health, and pursue care for what they define as treatable disease. The way culture impacts an individual's thinking about health is highly variable, depending to a large extent on the degree to which that person has adapted to the wider culture in the United States (Leavitt, 2010).

With an increase in patient diversity comes a need for health institutions and practitioners to bridge barriers to safe and effective health care when they do not share a culture with their patients. Effectively bridging culture requires accommodation on various institutional levels, including organizational factors (provider diversity, policies), structural factors (process of care services such as language interpretation), and clinical factors (encounter-level factors related to provider understanding of sociocultural beliefs and behaviors) (Betancourt, Green, Carillo, & Park, 2005).

While the need for culturally and linguistically appropriate services in health care is supported widely, strategies used to increase provider competence have not demonstrated significant effects on clinical outcomes (Beach et al., 2005; Lie, Lee-Rey, Gomez, Bereknyei, & Braddock, 2011). Perhaps culture in medicine has been reduced to an approach in which characteristics of a culture appear in a list of descriptors which providers are expected to use in patient interactions (Kleinman & Benson, 2006). Cultural guides commonly list primary characteristics of national or ethnic groups with tips for interacting with members of each group.

The case illustrates the need for a nuanced version of culture that requires providers to use general knowledge of the patient's culture as a starting point from which to begin an inquiry of the specific patient's perspective on treatment. Distinct from a trait list that employs descriptions of patient beliefs assumed to apply to most members of a culture, an explanatory model approach focuses on the individual, his or her sense of ethnic identity, preferences and values, narrative of the illness, and degree to which culture influences and shapes understanding and preference of medical care (Kleinman & Benson, 2006). Ms. C's individual interpretation of illness is central to the care team's debate on determination of decisional capacity.

Ethical Issues

Two related issues are central to this case: the ability of medical practitioners to assess decisional capacity in patients from different cultures, and the difficulty of surrogate decision making when the patient refuses to disclose relevant personal health information.

Determining Capacity through the Barrier of Culture

Modern medical practice is built on the assumption that patients with decisional capacity provide informed consent for medical care. Patients theoretically make a voluntary decision to pursue treatment after receiving and understanding applicable medical information (Applebaum, 2007). Distinct from the issue of competence (legal status indicating an individual's authority to make healthcare decisions) is the concept of decisional capacity (a patient's ability to understand, assess, and choose from credible options) (Jonsen et al., 2015). While specific criteria and procedures for determining capacity may vary, four general abilities are required to show capacity: ability to communicate a choice, understand relevant information, appreciate consequences of various choices, and analyze the choices (Applebaum, 2007).

Under common circumstances with culturally concordant physicians and patients, incapacity may go unrecognized until an issue triggers the need for formal assessment. With patients from nondominant cultural backgrounds, language barriers can mask factors indicating a lack of capacity until specific decisions must be made. The process of determining capacity is complex and subject to a variety of issues (e.g., provider training, perceptual bias, unstructured judgments based on inconsistent criteria). For patients who identify with nondominant cultural backgrounds, determination of capacity involves additional challenges (Marshall, Thomasma, & Bergsma, 1994). For the current case, use of Applebaum's (2007) four criteria for determining capacity may be considered in light of patient culture.

Ability to Communicate a Choice and Understand Relevant Information

The ability to express clearly a treatment choice is not a simple matter for patients with limited English proficiency (LEP). LEP presents a series of challenges, particularly with languages of less diffusion such as Haitian Creole. The factors impacting a patient's ability to express a choice and understand the information needed to make the choice rely on the method, consistency, and quality of medical interpretation used with the patient. Extensive research points to disadvantages of using untrained interpreters for communication; these include misinterpretation of vital information, incomplete interpretation, conflict of interest with use of family as interpreters, and distortion of the information transmitted (Applebaum, 2007; Brisset, Leanza, & Laforest, 2013; Karliner, Jacobs, Chen, & Mutha, 2007).

Ms. C. had used interpreters inconsistently during her treatment for HIV and associated conditions. Most providers in the outpatient setting had been limited to using telephonic interpreting to communicate, which can be less accurate than interpreting done by qualified in-person medical interpreters (Bagchi, 2011). Telephonic interpreting requires the patient and provider to work with a different interpreter on every call, adding variability in terminology, accent, and level of professionalization and training. With Haitian Creole, many medical terms do not have equivalent translations so interpreters inconsistently use paraphrasing and description to make the meaning transfer, increasing confusion for the patient. Even when an accurate interpretation exists, individuals with low health literacy may not be able to understand medical terms (Colin & Paperwalla, 2003).

The attending psychiatrist who had been trying to determine Mrs. C's capacity initially used telephonic interpreting to communicate with the patient. He cited the patient "not knowing what dialysis is" as evidence of confusion. During subsequent conversations using a qualified in-person interpreter, the psychiatrist stated most initial concerns had been resolved. A possible explanation for the initial misunderstanding may be the variability with which telephonic interpreters had translated the term dialysis, creating confusion for the patient. In this case, Ms. C. had not completed secondary education and had limited understanding of basic concepts related to her health. Although providers repeatedly explained how HIV was related to the conditions that required her hospitalization, she consistently failed to express understanding or acceptance of these explanations.

Appreciate the Situation and its Consequences and Reasoning about Treatment Options

Toward the beginning of her current hospitalization, Ms. C. told her treatment team she did not think their treatment would cure or control her illness. She said she could only get better "with treatment that I can get at home," referring to traditional health practices in Haiti. The clinicians who followed her outpatient treatment reported she previously had returned to Haiti to participate in traditional healing practices associated with the voodoo faith. Although she accepted treatment from the hospital, her belief was that her illness lay with other unspecified causes; traditional Haitian beliefs include curses as the cause of HIV (Brawner et al., 2016). When the ethics consult was requested, Ms. C. expressed a desire to leave the hospital to be with her family and travel to Haiti for treatment. The psychiatrist expressed concern about her decisional capacity because she was unable to acknowledge her HIV disease and understand or agree that suspending her current treatment could result in symptom exacerbation and possible death.

The ability of a patient to express appreciation of an illness is problematic when the patient holds a belief inconsistent with modern medical science. This case suggests lower socioeconomic backgrounds, low levels of formal education, and a prevalence of beliefs in an etiology of illness that differs from medical science may complicate a patient's ability to appreciate the severity of illness and consequences of available alternatives. Importantly, belief in an alternate etiology for illness does not indicate automatically an incapacity for decision making (Marshall et al., 1994; O'Connor, 1995). For example, Christian Scientists may argue that illness is a result of spiritual imbalance and estrangement from God. While they do not deny certain biological processes are involved, they identify the ultimate cause of illness as spiritual, not physical (Abbot & Gottschalk, 2002). Similarly, Ms. C.'s questioning of the consequences of seeking her culturally accepted treatment over the care plan suggested by her western providers may not indicate incapacity for decision making, but an alternative belief system in which traditional Haitian approaches are favored over biomedical treatment.

Regarding reasoning about treatment options, Applebaum (2007) described the patient's task as a rational process of manipulating relevant information; the physician's approach was to ask the patient to compare treatment options and consequences and offer reasons for her selection. This again presents the difficult task of evaluating how much of the patient's rational process of comparing options depends on the validity of the assumptions regarding alternatives. A patient may show a rational process for selecting an option, even if the option does not appear rational to the care team. In the case of traditional Haitian beliefs linked to the practice of Voodoo, historical biases and misinformation in the United States regarding this belief system enable a stereotypical view of the spiritual practice as superstition (Khoury, Kaiser, Keys, Brewster, & Kohrt, 2012).

Surrogate Decision Makers

Using the substituted judgement standard, surrogate decision makers preserve patient autonomy by making decisions the patient would have made before losing capacity. When surrogates lack knowledge of what the patient would have wanted, the best interest standard is used to make medical decisions perceived to be in the patient's best interest (Jonsen et al., 2015). To make the best decisions, the surrogate decision maker needs all relevant information concerning the patient's clinical condition, pathology, expected clinical course, and prognosis. A surrogate cannot make an informed decision if lacking relevant clinical information. Ms. C. vehemently refused to share her diagnosis of HIV with any friends or family. To preserve her autonomy, the medical team tried to convince her of the importance of naming a trusted surrogate to make her medical decisions when she lost capacity: someone to whom she would divulge her medical history. Ms. C. refused, insisting she would not lose decisional capacity. Even when told she was dying and the team would have to work with a decision maker, Ms. C. refused to name anyone or have her medical history divulged; she threatened suicide if her family were to learn of her diagnosis.

Team members were concerned about developing a treatment plan consistent with the patient's goals of care. With continued intermittent adherence, Ms. C.'s disease will become treatment resistant. Her clinical condition was deteriorating. While wanting to be cul turally supportive, the team believed Ms. C. was wrong in her assessment of the etiology of her medical condition; if they were unable to convince her to remain in the hospital and continue treatment, she would die. One nurse asked, "How can I provide culturally competent care when the cultural belief is wrong?"

Nursing Implications

Nurses and other team members experienced moral distress over continuing aggressive medical care when Ms. C. would not recover. More importantly, they were concerned about allowing her to leave the hospital against medical advice because of their difficulty discerning if the core issue was her ability to understand options or her adherence to traditional Haitian health beliefs. To complicate the situation further, nurses felt restricted in seeking the family's opinion of the patient's capacity to understand and participate in her care. Keeping the diagnosis from her mother, who was demanding to know why her daughter was not improving, was extremely difficult.

Working with the palliative care team and interpreter, the care team held culturally sensitive advance care planning discussions with Ms. C. Their goal was to maintain her autonomy by enabling her to make her own medical decisions and document them as an advance directive. Working from a framework of cultural humility, the team devised a strategy to respect Ms. C.'s wishes while defining a course of action for her end-of-life care. Presumptive scenarios were used. For example, "If you should stop breathing as you are dying, would you want a tube placed to be connected to a breathing machine that would prolong the dying process?" "When you die, and your heart stops, would you want us to perform CPR to attempt to restart your heart, knowing that this would not fix the underlying disease?" These questions and answers were documented as an advance directive. As Ms. C.'s disease process progressed, she received a "do not resuscitate" order consistent with her previously expressed wishes. Never realizing her ultimate wish to leave the hospital, she passed away peacefully about 2 weeks after this discussion.

Conclusion

Cultural competence in a healthcare context requires deeper understanding of a patient's beliefs and values. Nurses can adopt a framework of cultural humility and conduct patient assessments in an affirming, respectful manner that enhances patient autonomy. They should advocate for patients who would benefit from qualified, in-person medical interpretation as supported by the American Nurses Association (2015) Code of Ethics. IMS]

REFERENCES

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Brawner, B.M., Alexander, K.A., Fannin, E.F, Baker, J.L., & Davis, Z.M. (2016). The role of sexual health professionals in developing a shared concept of risky sexual behavior as it relates to HIV transmission. Public Health Nurse, 33(2), 139-150.

Brisset, C., Leanza, Y, & Laforest, K. (2013). Working with interpreters in health care: A systematic review and meta-ethnography of qualitative studies. Patient Education and Counseling, 91(2), 131-140.

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Khoury, N.M., Kaiser, B.N., Keys, H.M., Brewster, A.R., & Kohrt, B.A. (2012). Explanatory models and mental health treatment: Is Vodou an obstacle to psychiatric treatment in rural Haiti? Culture, Medicine and Psychiatry: An International Journal of Cross-Cultural Health Research, 36(3), 514-534.

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Jacqueline Ortiz, MPhil, is Director, Health Equity and Cultural Competence, Christiana Care Health System, Newark, DE.

Donna Casey, DNP(c), MA, BSN, RN, FABC, NE-BC, is Vice President Patient Care Services, and Co-Chair, Ethics Committee, Christiana Care Health System, Newark, DE.
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Title Annotation:Ethics, Law, and Policy
Author:Ortiz, Jacqueline; Casey, Donna
Publication:MedSurg Nursing
Date:Jul 1, 2017
Words:3451
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