CROSS-CULTURAL INFLUENCES AND ADVANCE CARE PLANNING
Spiritual values and beliefs are deeply intertwined with cultural influences. Thus, they impact health care decision making and ACP in several ways, including:
1. Historical cross-cultural abuses and prejudices of disadvantaged minority groups' health care;
2. Cultural biases about “Western” values and medicine by both health care professionals and the individuals served;
3. Requests for nondisclosure of health care information to the person who is ill;
4. Different cultural and spiritual values regarding what constitutes life, treatment withdrawal, place of death, and manner of death; and
5. Misunderstanding about rituals at EOL, as well as misunderstandings that may arise from cultural and language differences.
The above five elements may help to explain the lower rates for completing advance directives among individuals from several ethnic backgrounds, including Asians, Hispanics, and African Americans (Searight & Gafford, 2005). The first element listed above indicates there may be a general distrust
of the U.S. health care system due to historical prejudices and discrimination, along with perceived and real disparities in access to care.
CONFLICTS WITH “WESTERN” MEDICAL SYSTEM VALUES
The second element refers to the locus of health care decision making in the United States that is widely influenced by Western medical values placing an emphasis on autonomy and individualism. Emphasis on the highly valued principle of autonomy and the Western value of physician beneficence, which may still be valued by older Americans, can potentially clash with values that are highly regarded in indigenous, interdependent, and community-based cultures and religions.
Three critical cultural and religious perspectives may differ from the widely regarded medical value of autonomy, thereby influencing EOL treatment and ACP—communicating bad news, locus of decision making, and the value of ACP. These differing perspectives can influence the course of discussions about goals of care and implementation of a previously documented ACP or, if a current ACP does not exist, developing an ACP for the first time.
Communicating bad news is when the health care professional informs the individual about a health care condition that indicates it is a life-threatening illness, or the exacerbation of a pre-existing condition that indicates more imminent death. In such cases, Western cultural values may infer that autonomy and the person's inherent “right to know” are important to uphold for the patient to weigh treatment options. Therefore, health care professionals may feel they have a “duty” to give the patient full disclosure about their illness, and the patient's loved ones may be seen as having a secondary or supportive role, rather than a role as primary decision maker.
However, in indigenous and interdependent cultures, family and loved ones and even religious leaders may be viewed as part of a communal decision-making body. These differences in values may be especially difficult to sort out when there are religious, spiritual, cultural, and language differences that may involve interpreters, different conversation styles, differing customs regarding personal space, eye contact, touch, and learning styles that differ from those of health care professionals.
It is not unusual for a patient's family or friends who are aware of the impending “bad news” to request nondisclosure—to ask that the sick individual not be told the “bad news.” There are many reasons for families or loved ones to request nondisclosure. Some cultures maintain high reverence for the physician as expert and authority and defer to the physician to make EOL decisions. In some cultures, the special status of the elderly includes the value of not burdening older adults unnecessarily when they are ill (Candib, 2002; Holland, Geary, Marchini, & Tross, 1987; Yeo & Hikuyeda, 2000). Another reason can be the belief that open discussion of serious illness may provoke unnecessary depression or anxiety for the sick person. Others may view discussion about serious illness and death with the sick individual as disrespectful or impolite; direct disclosure may even be perceived as inhumane (Searight & Gafford, 2005).
Some people hold the belief that speaking aloud or thinking consciously about a condition may cause the illness or death to become real. In other words, one's thoughts and one's words are very powerful and may be selffulfilling.
Families may feel that direct disclosure of diagnosis and/or prognosis may eliminate hope for the person who is seriously ill. If hope is shattered, people may not continue to enjoy or engage in life. Patients may feel like they are already dead, even though they are still living (Candib, 2002).
Others may request nondisclosure because they may feel that it is in “God's” hands and they shouldn't try to influence the outcome. It is important to trust God, and believe in “God's will be done.”
Such requests may also be based on real past experiences, such as major depression or even a previous suicide attempt. The family may be concerned about depression that may either be a pre-existing condition, or that the anxiety of illness and imminent dying may create depression that may influence the individual's willingness to live and to engage in ACP (Liu et al., 1999; Matsumura et al., 2002).
When nondisclosure is requested, health care professionals can be obligated to not reveal that the diagnosis is actually terminal and help the sick individual to maintain optimism and hope (Searight & Gafford, 2005). Thus, nondisclosure can be a professional dilemma for health care professionals who value individual autonomy and the individual's “right to know” to make decisions about health care treatments and decisions about what is important as death draws near. What does a health care professional do?
When family or friends request nondisclosure it is important to determine the cause and whether the reasons and fears are proportional to reality, based on real previous experiences, or differences in perception of family role in decision making. When the reason for nondisclosure is based on cultural and/or religiously defined roles, then it can be important to explore who makes decisions, who is included in the discussions about the major illness, and whether full disclosure is acceptable. It may be helpful to negotiate nondisclosure with families, offering a statement of respect for their position and concern, and asking why the request of nondisclosure is being
made. It can be helpful to determine if loved ones have discussed desires for disclosure or nondisclosure with the patient and, if not, to explore what the patient's decision might possibly be if he or she could choose for themselves. Another approach is to discuss with members of the patient's support network the possibility of confirming with the sick person how much information about their disease and prognosis he or she wants to receive. If the sick individual requests full disclosure, then let the family know that you will comply. If the person asks that you talk only to the family, then affirm that you will respect the sick individual's wishes and talk with the family.
Health care professionals can explore the family's concerns to provide additional education and support, and to establish who they would like to make decisions. If reasons for requesting nondisclosure are based on previous experience with mental health concerns, then it might be helpful to obtain psychological assistance to determine how much information to deliver, and provide referrals for ongoing psychological support.