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Social Considerations

Social considerations are quite prominent in ACP. This includes key informal networks and significant others in the person's life, such as family and friends. Such persons may be helpful in serving as surrogate decision makers or providing care in the future. As previously stated, ACP is not entirely an autonomous undertaking, as decisions made often necessitate consideration of impact on others. However, it is also important to note that older people do not need to involve others, and, without their expressed approval to engage others, in many cases, practitioner communication with others may be prohibited under the Health Insurance and Privacy Protection Act (HIPPA). For a variety of reasons, many older adults may have dwindling networks of others in their lives. For example, a study conducted by systematic random sampling of older adults and ACP in Florida revealed that the majority of persons anticipating the need for future care in their lives relied more so on friends (81%) than relatives (42%) (Black, Reynolds, & Osman, 2008).

It is important to ascertain whether informal supports are willing, able, and available to serve as surrogate decision makers or caregivers. For example, a systematic review on surrogate decision makers found that at least one
third experienced a negative emotional burden such as stress, guilt, and doubt over their decisions, and the negative effects were often substantial and typically lasted months or, in some cases, years (Wendler & Rid, 2011). Conversely, research also suggests that increased communication with surrogates is effective in facilitating ACP decisions by increasing understanding about personal goals and preferences (Kirchhoff, Hammes, Kehl, Briggs, & Brown, 2010).

People vary greatly in their reliance on family in planning for future care needs as a result of family structure as well as current and past familial relationships (Roberto, Allen, & Blieszner, 2001), with some people preferring to receive formal care through providers such as home care agencies over family members. Moreover, there are serious concerns about caregiver burden. Research indicates that caregivers have competing responsibilities and roles and high levels of stress in EOL issues related to caregiving (Haley, 2003). In addition, the costs of future care for access to ongoing treatment, transportation, medications, and supplies can impose serious financial burdens on caregivers as well as older adults (Haley, 2003). In their pioneering work and recommendations, the Family Caregiver Alliance has called for the comprehensive assessment of caregiver capacity to provide care as an important practice and policy standard in consideration of all care plans (Family Caregiver Alliance, 2006).

Cultural Considerations

Culture has become increasingly identified as an important aspect of ACP. Culture may have an important impact on how people's specific ethnic views impact their attitudes regarding treatment wishes, ADs, and decision making about terminal care (Perkins, Geppert, Gonzales, Coretez, & Hazuda, 2002). Cultural issues that impact decision making include language, locus of decision making, fatalistic beliefs, gender and power issues in relationships, and sociopolitical and historical factors that might influence beliefs regarding illness, health care, and death (Ersek, Kagawa- Singer, Barnes, Blackhall, & Koenig, 1998). For example, not wanting to talk about future care needs was a key finding in focus group interviews with both Hispanic elders and their adult children, despite the importance of family relationships (Gutheil & Heyman, 2006) and other research showing clear preferences for less aggressive and comfort-focused care (Kelley, Wenger, & Sarkisian, 2010). Other research investigating preferences for aggressive care at the EOL revealed that, compared to Caucasians, African Americans and Hispanics preferred dying in the hospital, wanted lifeprolonging drugs, and were significantly less than Caucasians to want potentially life-shortening palliative drugs (Barnato, Anthony, Skinner, Gallagher, & Fisher, 2009). Therefore, ACP should be tailored to address the specific cultural influences (Ersek et al., 1998; Perkins et al., 2002) and
sociodemographic characteristics of age, gender, ethnicity, and education (Hopp, 2000; Kelley et al., 2010).

 
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