Factors Associated With Designation of a Substitute Decision-Maker in Older Asian Americans: The Role of Cultural Factors

Abstract

The present study examined the prevalence of and factors associated with the designation of a substitute decision-maker (SDM) in a sample of older Asian Americans. Particular emphasis was placed on cultural factors (ethnicity, time in the United States, English proficiency, acculturation, and cultural belief) that might influence on one’s attitudes toward death and dying or end-of-life decision-making. Data were drawn from the 499 participants aged 60 years and older using the 2015 Asian American Quality of Life survey. Twenty-two percent of the sample had completed a legal document identifying a SDM. Results of a hierarchical logistic regression indicated that ethnicity, time in the United States, English proficiency, and acculturation were significant predictors. By examining the role of cultural factors in predicting SDM designation, the present study provided implications for culturally tailored strategies to help older Asian Americans plan their end-of-life care.

Keywords

substitute decision-maker end-of-life older adults Asian Americans culture

Introduction

Making end-of-life (EoL) care decisions is a universal issue that anyone can face at one point in their lifetime either for themselves or for loved ones, and it can be a more relevant and imminent issue for older adults. According to a study that examined the prevalence of the need for EoL decision-making, 42.5% of older adults who had died between 2000 and 2006 required decision-making about care and treatment near the EoL, and 70.3% of them lacked the capacity to make their own decisions about medical treatment (Silveira, Kim, & Langa, 2010). These findings indicate that approximately one in three older Americans requires a substitute decision-maker (SDM) at the EoL, who makes substituted judgment regarding treatment preferences on behalf of an incapacitated patient (Sabatino, 2010; Silveira et al., 2010). In fact, the potential need for the designation of a SDM may continue to increase and become a growing imperative given the unprecedented growth of the number of older adults with Alzheimer’s and other dementias that are characterized by cognitive impairment (Alzheimer’s Association, 2019).

Designation of a SDM often takes place through formulating advance directives (ADs) which are legal documents that consist of a living will documenting an individual’s EoL care preferences and health-care proxy designating someone to make medical decisions when the individual loses decisional capacity to make his or her own care decisions (Giger, Davidhizar, & Fordham, 2006; Gray, Nolan, Clayman, & Wenzel, 2019; Mahaney-Price et al., 2014). ADs serve as a critical means for multiple stakeholders including individual patients, family members, health-care providers, and governments to preserve patients’ autonomy, enhance quality of life near the end by providing EoL care consistent with their values and preferences, mitigate the burden of SDMs, and reduce unwanted EoL care and health-care costs (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014; Hickman & Pinto, 2014; Silveira et al., 2010; Zhang et al., 2009). For example, those who had appointed a SDM or discussed EoL preferences with physicians were less likely to receive aggressive EoL care or die in a hospital or intensive care unit compared with their counterparts without SDM designation or EoL discussions with their physicians (Silveira et al., 2010; Zhang et al., 2009). In addition, health-care costs spent were approximately 36% lower for those who had engaged in EoL discussions, and the lower medical costs were associated with better quality of death reported by the caregiver (Zhang et al., 2009).

Despite a growing evidence base for the positive effects of ADs, the completion rate of ADs (i.e., living will or designation of a SDM) still remains low, particularly among racial and ethnic minority older adults (Harrison, Adrion, Ritchie, Sudore, & Smith, 2016; Ko & Lee, 2014; Kwak & Haley, 2005; Rao, Anderson, Lin, & Laux, 2014; Waite et al., 2013). Whereas the AD completion rate for general older populations ranged between 29% and 59% (Morrison & Meier, 2004; Rao et al., 2014; Waite et al., 2013), the rate was much lower for older Asian Americans, ranging between 5% and 22% (Jang, Park, Chiriboga, Radhakrishnan, & Kim, 2017; Ko & Lee, 2010). The rate of the designation of a SDM or health-care proxy, in particular, ranged between 14% and 66% for general populations (McAfee, Jordan, Sheu, Dake, & Kopp Miller, 2019; McCarthy et al., 2008; Silveira et al., 2010). However, little is known about the SDM designation rate for Asian Americans because research examining specific types of ADs (i.e., designation of SDM) among Asian Americans is sparse (Hong, Yi, Johnson, & Adamek, 2018; Kwak & Haley, 2005). Also, there is a potential upward bias in the reported results of a SDM designation rate (e.g., 29% for Asian Americans) due to excluding those who do not speak English in the sample (Carr, 2012).

To address this gap in the literature, the present study aimed to examine the prevalence of the designation of a SDM and the factors associated with it, with a particular focus on examining the role of cultural factors using a sample of diverse ethnic groups of older Asian Americans. With a 72% rate of population growth during the past 15 years, Asian Americans are the fastest-growing racial group in the United States, and their older populations are expected to become the second-oldest group by 2050 (López, Ruiz, & Patten, 2017; Vincent & Velcoff, 2010). Given the cultural and linguistic diversity among Asian Americans, in addition to their demographic growth and changes (López et al., 2017), it is imperative for health-care professionals, researchers, and policy makers to pay keen attention to understanding how cultural aspects play a role among older Asian Americans in planning and making decisions about EoL care.

Based on previous conceptual and empirical research that discussed various cultural aspects and their roles in EoL care planning (Bullock, 2011; Fang, Sixsmith, Sinclair, & Horst, 2016; Giger et al., 2006; Johnstone, & Kanitsaki, 2009; Kwak, Ko, & Kramer, 2014), the present study included ethnicity, length of time in the United States, English proficiency, acculturation, and belief against speaking about death as cultural factors. Ethnicity is known as a marker of common cultural beliefs and values which plays a critical role in EoL decision-making (Johnson, Kuchibhatla, & Tulsky, 2008). Substantial research has, in fact, consistently documented racial and ethnic disparities in AD completion, reporting significantly lower completion rates for non-Whites than for Whites (Harrison et al., 2016; Ko & Lee, 2014; Kwak & Haley, 2005; McAfee et al., 2019; Rao et al., 2014; Waite et al., 2013). Advance EoL care planning can also be challenging for older Asian Americans who are unfamiliar to Western cultural views of death and dying. Whereas ADs were developed on the basis of Western-oriented values (i.e., self-determination, patient autonomy, and dignity), Asian cultures value collectivism, family interdependence, family-centered decision-making in communicating with health-care professionals, making EoL decisions, and determining if or when to disclose diagnosis and prognosis to a patient (Fang et al., 2016; Giger et al., 2006; Johnstone, & Kanitsaki, 2009; Sun, 2012). Given the influence of Asian cultural values and acculturation processes on EoL care (Matsumura et al., 2002; Sun, 2012), we used length of time in the United States, English proficiency, and acculturation as proxies to assess the extent to which older Asian Americans have acculturated to Western values. We predicted that older Asian Americans who have a shorter stay in the United States, a lower level of acculturation and English proficiency would be less likely to designate a SDM. In addition, considering that taboos against discussing death is pervasive in Asian cultures due to the belief that discussing death would hasten death (Fang et al., 2016; Kwak et al., 2014; Ohr, Jeong, & Saul, 2017; Sun, 2012), we predicted that a stronger belief against speaking of death would be associated with lower odds of designating a SDM.

Methods

Data

Data used for this study were extracted from the 2015 Asian American Quality of Life (AAQoL) survey, which were collected from August to December, 2015, as part of the City of Austin’s AAQoL initiative. Data included 2,614 self-identified Asian Americans aged 18 years and older living in Austin, Texas. Ten-page questionnaires were self-administered by the study participants using paper and pencil at places such as churches, temples, grocery stores, small group meetings, and cultural events. Given the cultural and linguistic diversities of the study participants, a culturally responsive approach was incorporated in collecting data. Eight different language versions of the survey (English, Chinese in both traditional and simplified characters, Hindi and Gujarati, Korean, Vietnamese, and Tagalog) were provided for the participants to choose their preferred language, and research assistants who shared the same culture and language with the target population were available at survey sites to provide assistance. It took approximately 20 minutes to complete the survey, and US $10 were paid in cash to each individual for participation. More information about AAQoL survey data is available elsewhere (City of Austin, 2017). This procedure was approved by a University’s institutional review board.

The sample of the present study included ethnically diverse Asian Americans aged 60 years and older (N = 533) who had been part of the 2015 AAQoL survey. After removal of 34 cases with missing information regarding the designation of a SDM, the sample included in the final analyses numbered 499 participants.

Measures

Designation of a SDM

The designation of a SDM was measured by using a question asking participants if they have a type of legal document that designates someone who can make medical decisions in the event that they are unable to do so. The response was coded as binary (0 = no, 1 = yes).

Cultural factors

Ethnicity, time in the United States, English proficiency, acculturation, and belief against speaking of death were considered as cultural factors. Ethnicity was measured by participants’ self-identification and categorized in five groups: (0 = Chinese, 1 = Asian Indian, 2 = Korean, 3 = Vietnamese, 4 = Other Asian). Time in the United States was assessed with a single-item question asking how long participants have stayed in the United States (in years) and was dichotomized (0 = < 10 years, 1 = ≥ 10 years). English proficiency was measured with a question asking participants to rate how well they spoke English (1 = not at all, 4 = very well). Using the U.S. Census criteria (Gambino, Acosta, & Grieco, 2014), those who spoke English less than “very well” were categorized as a group with limited English proficiency, and those who spoke English “very well” as a group with English proficiency (0 = limited English proficiency, 1 = English proficient). Acculturation was assessed with a single question on respondents’ familiarity with the mainstream American culture and customs, and the response was dichotomized (0 = very low/low, 1 = high/very high). Belief against speaking of death was measured by asking participants to rate the extent that they agreed with the following statement: “One should avoid speaking about bad things (e.g., disease and death) because it might cause them to happen.” A 4-point response format was dichotomized, identifying those who strongly or somewhat disagreed with the statement as having weak belief and those who strongly or somewhat agreed as having strong belief (0 = strong belief, 1 = weak belief).

Background variables

Background variables such as demographic and socioeconomic factors were considered as covariates in the study: age (0 = 60–74 1 = ≥ 75 years), gender (0 = male, 1 = female), marital status (0 = married, 1 = not married), education (0 = ≤ 12 years, 1 = >12 years), financial status (0 = unable to make ends meet, 1 = can make ends meet), self-rated health (0 = excellent/very good/good, 1 = fair/poor), and coverage by health insurance (0 = no, 1 = yes).

Data Analysis

Descriptive characteristics of the overall sample were assessed as the first step. Then SDM designation rates were reviewed for each subgroup and a series of Chi-square (χ²) tests were conducted to assess ethnic group difference. Chinese group was used as a reference group because they are the largest and most-studied Asian subgroup. Hierarchical logistic regression analyses were conducted to test the incremental predictive power of (a) background variables (Model 1) and (b) culture-related variables (Model 2) on the designation of a SDM. All analyses were conducted using SPSS version 25.

Results

Sample Characteristics

Descriptive characteristics of the overall sample are presented in the first column of Table 1. The average age of the sample was 69.4 years (SD = 6.8) and ranged from 60 to 89. Approximately 75% were young-old (60–74) and 25% were old-old ( ≥75). More than half (54.7%) were women, nearly a quarter (24.1%) were not married, and about 35% had 12 or fewer years of education. Approximately 31% of the sample reported difficulties in making ends meet, a quarter (24.6%) rated their health as either fair or poor, and 21% were uninsured. The largest ethnic group was Chinese (30.9%), followed by Vietnamese (19.8%), Korean (19.4%), Asian Indian (18.6%), and other Asian (11.2%). About 19% have lived in the United States less than 10 years, and about 83% had limited English proficiency. Approximately 44% had a low level of acculturation, and slightly more than a quarter (25.5%) had a strong belief that talking about disease or death should be avoided because it might cause them to happen. Rate of completing a legal document appointing a SDM was 22% for the sample.

Table 1.

Characteristics of the Overall Sample and Subgroup Comparisons in the Designation of a Substitute Decision-Maker (N = 499).

	Overall sample (%)	SDM designation rate (%)
Background variables
Age
60–74	75.4	23.1
≥75	24.6	18.7
Gender
Male	45.3	22.1
Female	54.7	22.4
Marital status
Not married	24.1	22.5
Married	75.9	22.0
Education
≤12 years	35.1	14.0
>12 years	64.9	26.6**
Financial status
Unable to make ends meet	30.6	12.5
Can make ends meet	69.4	26.2**
Self-rated health
Excellent or very good or good	75.4	24.1
Fair or poor	24.6	16.4
Health insurance
No	21.0	6.8
Yes	79.0	26.5***
Culture-related variables
Ethnicity
Chinese	30.9	24.7
Asian Indian	18.6	31.2
Korean	19.4	8.2**
Vietnamese	19.8	21.2
Other Asian	11.2	25.0
Time in the United States
<10 years	19.1	4.3
≥10 years	80.9	26.4***
English proficiency
Limited	83.4	16.3
Proficient	16.6	50.0***
Acculturation
Low	44.3	11.5
High	55.7	30.8***
Belief against speaking of death
Weak	74.5	22.5
Strong	25.5	19.2
SDM designation
No	78.0	–
Yes	22.0	–

Note. SDM = substitute decision-maker.

χ² tests were conducted to compare the designation rates of SDM between the subgroups of each variable. Chinese was used as a reference group for ethnicity.

**p < .01. ***p < .001.

Subgroup Comparisons of the Rate of a SDM Designation

Comparisons of the rate of a SDM designation in subgroups are indicated in the second column of Table 1. As for background variables, a SDM designation rate was significantly different in the subgroups of education, financial status, and health insurance. The rates were significantly higher in the groups with higher educational attainment (26.6% vs. 14.0%), better financial status (26.2% vs. 12.5%), and health insurance (26.5% vs. 6.8%). In terms of cultural factors, a SDM designation rate was significantly different in the subgroups of ethnicity, time in the United States, English proficiency, and acculturation. Asian Indian older adults had the highest SDM designation rate at 31.2%, followed by other Asians (25%), Chinese (24.7%), Vietnamese (21.2%), and Koreans (8.2%); compared with Chinese, older Korean Americans had a significantly lower rate of SDM designation. Older Asian Americans who have lived in the United States 10 or more years were more likely to appoint a SDM compared with those who lived in the United States less than 10 years (26.4% vs. 4.3%). SDM designation rates were particularly high for those who spoke English proficiently (50% vs. 16.3%) and those who had a high level of acculturation (30.8% vs. 11.5%). There were no significant group differences by age, gender, marital status, self-rated health, and belief against speaking of death.

Role of Cultural Factors in a SDM Designation

Table 2 presents a summary of hierarchical logistic regression analyses for variables predicting the designation of a SDM. In Model 1, background variables (i.e., age, gender, marital status, education, financial status, self-rated health, and health insurance) were entered, and education, financial status, and health insurance were found to be significant predictors of the SDM designation. Having higher education, being able to make ends meet, and having health insurance increased the odds of designating a SDM by 2.04, 1.98, and 7.09 times, respectively.

Table 2.

Logistic Regression Models of the Designation of a Substitute Decision-Maker.

	Odds ratio (95% confidence interval)
	Model 1	Model 2
Background variables
Age (ref: 60–74)
≥75	.90 [.46, 1.74]	.77 [.37, 1.63]
Gender (ref: Male)
Female	1.19 [.71, 1.98]	1.17 [.66, 2.06]
Marital status (ref: Married)
Not married	.97 [.52, 1.82]	1.12 [.56, 2.22]
Education (ref: ≤12 years)
>12 years	2.04 [1.13, 3.66]*	1.01 [.51, 2.02]
Financial status (ref: Unable to make ends meet)
Can make ends meet	1.98 [1.03, 3.82]*	1.61 [.78, 3.30]
Self-rated health (ref: Excellent or very good or good)
Fair or poor	1.01 [.51, 2.00]	1.31 [.62, 2.79]
Health insurance (ref: No)
Yes	7.09 [2.15, 23.38]**	3.81 [.99, 14.70]
Culture-related variables
Ethnicity (ref: Chinese)
Asian Indian		.99 [.44, 2.20]
Korean		.20 [.08, .51]**
Vietnamese		.36 [.16, .83]*
Other Asian		.34 [.14, .84]*
Time in the United States (ref: <10 years)
≥10 years		3.89 [1.03, 14.70]*
English proficiency (ref: Limited)
Proficient		2.41 [1.22, 4.78]*
Acculturation (ref: Low)
High		2.66 [1.32, 5.35]**
Belief against speaking of death (ref: Strong)
Weak		.86 [.45, 1.64]
−2 Log likelihood	388.93	343.14
χ²/df	36.62/7***	82.41/15***
Nagelkerke R²	.13	.28

*p < .05. **p < .01. ***p < .001.

In Model 2, the impact of cultural factors (ethnicity, time in the United States, English proficiency, acculturation, and belief against speaking of death) were tested after controlling for the covariates. Ethnicity was a significant predictor of the designation of a SDM: Compared with Chinese, those identifying as Korean, Vietnamese, and other Asian had reduced odds of designating a SDM by 80%, 64%, and 66%, respectively. Older adults who stayed in the United States for 10 or more years had nearly four times higher odds of designating a SDM (odds ratio [OR] = 3.89, 95% confidence interval [CI] = [1.03, 14.70]). The odds of SDM designation were also significantly higher for those with English proficiency (OR = 2.41, 95% CI = [1.22, 4.78]) and with a high level of acculturation (OR = 2.66, 95% CI = [1.32, 5.35]). Belief against speaking of death was not significantly associated with SDM designation. The overall variances accounted for by Models 1 and 2 were 13% (Nagelkerke R² = .13) and 28% (Nagelkerke R² = .28), indicating that cultural factors contributed about 15% of the total variance to the final model.

Discussion

Despite the significance of ADs as an important mechanism assisting older adults to receive EoL care consistent with their own values and preferences and enhance quality of life near death (Brinkman-Stoppelenburg et al., 2014; Hickman & Pinto, 2014; Silveira et al., 2010; Zhang et al., 2009), the AD completion rate among older Asian Americans remains much lower compared with other racial groups (Harrison et al., 2016; Ko & Lee, 2014; Kwak & Haley, 2005; Rao et al., 2014; Waite et al., 2013). Although designating a SDM or health-care proxy can be of particular importance to older Asian Americans as they often expect their family members (i.e., oldest child, oldest male in the family) to make EoL decisions (Cruz-Oliver, 2017), little is known about the prevalence of and factors associated with SDM designation among older Asian Americans. Given the rapid growth and cultural diversity of the older Asian population in the United States (López et al., 2017; Vincent & Velcoff, 2010), the present study examined the prevalence and predictors of SDM designation, with a particular attention to the role of cultural factors, using a sample of diverse older Asian Americans.

Findings of the study indicated that 22% of the sample had completed a legal document appointing a SDM. This rate is about two to three times lower than that of general older population, which ranged between 54.3% and 66% (McCarthy et al., 2008; Silveira et al., 2010). Particularly notable is the significantly lower rate of SDM designation among older Korean Americans (8.2%) compared with other ethnic groups, again according with earlier reports (Jang et al., 2017; Ko & Lee, 2010). One possible explanation for such a low rate may be found in the relatively lower educational levels and higher prevalence of limited English proficiency among the Korean Americans in the study—nearly 45% had less than a high school education, and about 96% had limited English proficiency. Low levels of education and language acquisition, which have been identified as barriers to gaining awareness of ADs among older Korean Americans (Dobbs, Park, Jang, & Meng, 2015; Kwak & Salmon, 2007), may have served as barriers to completing a legal document appointing a SDM.

Results of a hierarchical logistic regression showed that all cultural factors considered in the study were significant except for the belief against speaking of death. Ethnic variations observed in the study—evidence that Koreans, Vietnamese, and other Asians were significantly less likely to designate a SDM compared with Chinese, whereas Asian Indians were not—highlight the importance of considering cultural differences across the ethnic groups. Thus, while there are commonly shared Asian cultural conventions such as family-centered decision-making, deferring patients’ autonomy to health-care professionals, and taboos against the discussion of death and dying (Fang et al., 2016; Ke, Huang, Hu, O’Connor, & Lee, 2017), it is important to understand that each ethnic group may hold different cultural values of its own. As there is a dearth of literature examining the mechanisms of such ethnic differences among older Asian Americans, further investigation is necessary to parse the relative contribution of cultural differences among Asian ethnic groups in the designation of a SDM.

The study also found that the odds of designating a SDM were higher for older adults who had stayed in the United States for 10 years or more, had English proficiency, and had a high level of acculturation into mainstream U.S. culture. These results supported our predictions and were consistent with previous studies (Dobbs et al., 2015; Jang et al., 2017; Sun et al., 2017). There is a great potential that older Asian Americans who have stayed in the United States longer, speak English fluently, and have higher level of acculturation may have adopted Western values and beliefs (i.e., patient autonomy and self-determination) and have applied these values to their EoL decision-making process. It is also possible that older Asian Americans with higher acculturation and less language barrier have more opportunities to obtain information regarding ADs and thus have a better awareness (Dobbs et al., 2015). Since a great majority of older Asian Americans are foreign-born with limited English proficiency (National Asian Pacific Center on Aging, 2018), they may not only retain traditional Asian cultural values toward EoL care but also face challenges in navigating EoL care-related information and communicating their care preferences with health-care professionals.

Belief against speaking of death because it will hasten death was much less prevalent among older Asian Americans than our expectation and did not significantly predict the SDM designation. Although further exploration is required, given a high proportion of Asian older adults expressing positive attitudes toward ADs (Kang et al., 2017; Lee et al., 2018; Sharma, Khosla, Tulsky, & Carrese, 2012), barriers to completing ADs or designating a SDM may be structural, such as a communication chasm between health-care providers and patients, health-care system obstacles, and lack of awareness (Dobbs et al., 2015; Gao et al., 2015; Periyakoil, Neri, & Kraemer, 2016) rather than cultural taboo discussing death per se.

Several limitations of the study need to be acknowledged. First, the cross-sectional nature of the study and regionally defined nonrepresentative sample limit the ability to draw causal inferences or to generalize the findings to a larger population of older Asian Americans. Another limitation of the study is that it was reliant on self-report measures and used single-item questions in assessing the level of acculturation and belief against speaking of death. Such measurements may be subject to bias and may not adequately capture complex dimensions of acculturation or beliefs about death. Future research should employ multi-item scales with good psychometric properties that can capture more objective and diverse aspects of acculturation and beliefs about death. Also, despite the recognition that EoL care preferences can vary across subethnic groups, more in-depth examination of ethnic variation was limited by this study’s small-sample size. It should also be noted that the present study only included a very specific type of ADs (designation of a SDM) as an outcome, which limits considering other types of ADs such as living will. Future studies need to expand on the concepts examined in this study by considering other types of ADs and Advance Care Planning (ACP) to broaden the understanding about EoL care. In addition, the roles of spirituality or religiosity as potential determinants of the designation of a SDM should be considered in future studies.

Despite these limitations, the present study contributes to the research on ADs, particularly SDM designation or health-care proxy, in older Asian Americans by serving as an essential step toward understanding the significant role of cultural factors. With the growing ethnic diversity and aging of the U.S. population, the findings of the study provide important implications for both research and practice. Despite the increasing need for surrogate decision-making among older Asian Americans, little is known about their SDM designation experiences. Considering over 30% of inaccuracy of surrogates in predicting patients’ treatment preferences and racial differences in substituted judgments observed in previous research (Pruchno, Cartwright, & Wilson-Genderson, 2009; Shalowitz, Garrett-Mayer, & Wendler, 2006), significant research efforts need to be directed not only toward exploring the possession of a legal document designating a SDM but also toward examining the challenges regarding making substituted judgments that are consistent with patients’ preferences.

As for practice, findings of the study underscore the significance of integrating culturally and linguistically sensitive approaches in promoting SDM designation. To maximize intervention efforts to better assist older Asian Americans and their families to prepare for EoL decision-making, current lack of culturally tailored approaches and services needs to be addressed. Interventions educating EoL decision-making information and enhancing awareness of potential EoL care options need to be developed in a way that reflects the cultural perspectives of patients and families and delivered in older Asian Americans’ preferred languages that are easily understood. Enhanced cultural sensitivity is also essential for health-care providers and practitioners to deliver quality EoL care and patient-centered care. Given the potential challenges due to cultural differences between older Asian American patient’s background and traditional medical practice (i.e., disclosing a disease, discussing death, and the role of family members in EoL decision-making), it is important for health-care providers and practitioners to acknowledge and respect the cultural differences.

Planning EoL care in advance by designating a SDM is a complex process that involves thinking and discussions among patients, family members, and health-care providers, and the decisions are often strongly influenced by all participants’ cultural norms and values. Thus, it is essential for both researchers and practitioners to understand and respect how older adults’ cultural backgrounds, values, and beliefs influence advance care planning and EoL care decisions.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support for data collection was provided by the City of Austin’s Asian American Quality of Life initiative (Contract No. 26-8275-39, PI—Yuri Jang, PhD).

ORCID iD

Min-Kyoung Rhee

Author Biographies

Min-Kyoung Rhee is a research assistant professor at the USC Suzanne Dworak-Peck School of Social Work and a faculty associate at the USC Edward R. Roybal Institute on Aging. She received her PhD in Social Work from University of Southern California and postdoctoral training from University of Texas at Austin. Her research agenda include social determinants of health and mental health disparities and end-of-life care, particularly among ethnic minority populations. She is currently working on a pilot grant project on examining racial and ethnic specific barriers to palliative and hospice care.

Yuri Jang is a professor at the USC Suzanne Dworak-Peck School of Social Work and a Senior Scientist at the USC Edward R. Roybal Institute on Aging. Professor Jang’s areas of interest include positive adaptation in aging, health disparities, and minority health and service utilization. Sponsored by the City of Austin, she has completed the Asian American Quality of Life (AAQoL) project – a city-wide needs assessment in Asian American communities. Her 5-year multi-site project, “Limited English Proficiency, Health, and Healthcare among Older Immigrants,” awarded an R01 grant from the National Institute on Aging.

References

Alzheimer’s Association. (2019). 2019 Alzheimer’s disease facts and figures. Retrieved from https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf

Brinkman-Stoppelenburg

Rietjens

J. A.

van der Heide

(2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), 1000–1025. doi:10.1177/0269216314526272

Bullock

(2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care, 7(1), 83–98. doi:10.1080/15524256.2011.548048

Carr

(2012). Racial and ethnic differences in advance care planning: Identifying subgroup patterns and obstacles. Journal of Aging and Health, 24(6), 923–947. doi:10.1177/0898264312449185

City of Austin. (2017). Asian American quality of life. Retrieved from http://austintexas.gov/sites/default/files/files/Communications/4.2_FINAL_AA_in_Austin_report_from_UT.pdf

Cruz-Oliver

D. M.

(2017). Hospice/palliative care: Concepts of disease and dying. In Cummings-Vaughn

Cruz-Oliver

D. M.

(Eds.), Ethnogeriatrics: Healthcare needs of diverse populations (pp. 159–178). Switzerland: Springer

Dobbs

Park

N. S.

Jang

Meng

(2015). Awareness and completion of advance directives in older Korean-American adults. Journal of the American Geriatrics Society, 63(3), 565–570. doi:10.1111/jgs.13309

Fang

M. L.

Sixsmith

Sinclair

Horst

(2016). A knowledge synthesis of culturally and spiritually sensitive end-of-life care: Findings from a scoping review. BMC Geriatrics, 16(1), 107. doi:10.1186/s12877-016-0282-6

Gambino

C. P.

Acosta

Y. D.

Grieco

E. M.

(2014). English-speaking ability of the foreign-born population in the United States: 2012. U.S. Census Bureau. Retrieved from https://www2.census.gov/library/publications/2014/acs/acs-26.pdf

10.

Gao

Sun

Kwak

Shen

H. W.

(2015). Knowledge of advance directive and perceptions of end-of-life care in Chinese-American elders: The role of acculturation. Palliative & Supportive Care, 13(6), 1677–1684. doi:10.1017/S147895151500067X

11.

Giger

J. N.

Davidhizar

R. E.

Fordham

(2006). Multi-cultural and multi-ethnic considerations and advanced directives: Developing cultural competency. Journal of Cultural Diversity, 13(1), 3–9.

12.

Gray

T. F.

Nolan

M. T.

Clayman

M. L.

Wenzel

J. A.

(2019). The decision partner in healthcare decision-making: A concept analysis. International Journal of Nursing Studies, 92, 79–89. doi:10.1016/j.ijnurstu.2019.01.006

13.

Harrison

K. L.

Adrion

E. R.

Ritchie

C. S.

Sudore

R. L.

Smith

A. K.

(2016). Low completion and disparities in advance care planning activities among older Medicare beneficiaries. JAMA Internal Medicine, 176(12), 1872–1875. doi:10.1001/jamainternmed.2016.6751

14.

Hickman

R. L.

Jr. Pinto

M. D.

(2014). Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill. Journal of Clinical Nursing, 23(5–6), 756–765. doi:10.1111/jocn.12427

15.

Hong

E. H.

Johnson

K. J.

Adamek

M. E.

(2018). Facilitators and barriers for advance care planning among ethnic and racial minorities in the US: A systematic review of the current literature. Journal of Immigrant and Minority Health, 20(5), 1277–1287. doi:10.1007/s10903-017-0670-9

16.

Jang

Park

N. S.

Chiriboga

D. A.

Radhakrishnan

Kim

M. T.

(2017). The knowing-doing gap in advance directives in Asian Americans: The role of education and acculturation. American Journal of Hospice and Palliative Medicine®, 34(9), 874–879. doi:10.1177/1049909116668518

17.

Johnson

K. S.

Kuchibhatla

Tulsky

J. A.

(2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatrics Society, 56(10), 1953–1958. doi:10.1111/j.1532-5415.2008.01919.x

18.

Johnstone

M. J.

Kanitsaki

(2009). Ethics and advance care planning in a culturally diverse society. Journal of Transcultural Nursing, 20(4), 405–416. doi:10.1177/1043659609340803

19.

Kang

Liu

X. H.

Zhang

Shan

P. Y.

Wang

J. P.

Zhong

, . . . Lou

H. L.

(2017). Attitudes toward advance directives among patients and their family members in China. Journal of the American Medical Directors Association, 18(9), 808.e7–808.e11. doi:10.1016/j.jamda.2017.05.014

20.

L. S.

Huang

W. Y.

O’Connor

Lee

(2017). Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliative Medicine, 31(5), 394–405. doi:10.1177/0269216316663507

21.

Lee

(2010). Completion of advance directives among Korean American and non-Hispanic white older adults. Research on Aging, 32(5), 618–644. doi:10.1177/0164027510377310

22.

Lee

(2014). Completion of advance directives among low-income older adults: Does race/ethnicity matter? American Journal of Hospice and Palliative Medicine®, 31(3), 247–253. doi:10.1177/1049909113486170

23.

Kwak

Haley

W. E.

(2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist, 45(5), 634–641. doi:10.1093/geront/45.5.634

24.

Kwak

Kramer

B. J.

(2014). Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: Perspectives of care managers on challenges and recommendations. Health & Social Care in the Community, 22(2), 169–177. doi:10.1111/hsc.12073

25.

Kwak

Salmon

J. R.

(2007). Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care. Journal of the American Geriatrics Society, 55(11), 1867–1872. doi:10.1111/j.1532-5415.2007.01394.x

26.

Lee

J. E.

Shin

D. W.

Son

K. Y.

Park

H. J.

Lim

J. Y.

Song

M. S.

, . . . Cho

(2018). Factors influencing attitudes toward advance directives in Korean older adults. Archives of Gerontology and Geriatrics, 74, 155–161. doi:10.1016/j.archger.2017.10.008

27.

López

Ruiz

N. G.

Patten

(2017). Key facts about Asian Americans, a diverse and growing population. Pew Research Center. Retrieved from http://www.pewresearch.org/fact-tank/2017/09/08/key-facts-about-asian-americans/

28.

Mahaney-Price

A. F.

Hilgeman

M. M.

Davis

L. L.

McNeal

S. F.

Conner

C. M.

Allen

R. S.

(2014). Living will status and desire for living will help among rural Alabama veterans. Research in Nursing & Health, 37(5), 379–390. doi:10.1002/nur.21617

29.

Matsumura

Bito

Liu

Kahn

Fukuhara

Kagawa ‐ Singer

Wenger

(2002). Acculturation of attitudes toward end-of-life care: A cross-cultural survey of Japanese Americans and Japanese. Journal of General Internal Medicine, 17(7), 531–539. doi:10.1046/j.1525-1497.2002.10734.x

30.

McAfee

C. A.

Jordan

T. R.

Sheu

J. J.

Dake

J. A.

Kopp Miller

B. A.

(2019). Predicting racial and ethnic disparities in advance care planning using the integrated behavioral model. OMEGA-Journal of Death and Dying, 78(4), 369–389. doi:10.1177/0030222817691286

31.

McCarthy

E. P.

Pencina

M. J.

Kelly-Hayes

Evans

J. C.

Oberacker

E. J.

D’Agostino

R. B.

, Sr. . . . Murabito

J. M.

(2008). Advance care planning and health care preferences of community-dwelling elders: The Framingham Heart Study. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 63(9), 951–959. doi:10.1093/gerona/63.9.951

32.

Morrison

R. S.

Meier

D. E.

(2004). High rates of advance care planning in New York City’s elderly population. Archives of Internal Medicine, 164(22), 2421–2426. doi:10.1001/archinte.164.22.2421

33.

National Asian Pacific Center on Aging. (2018). Asian Americans and Pacific Islanders in the United States aged 55 years and older: Population, nativity, and language. Data Brief, 1(1), 1–8. Retrieved from http://www.searac.org/wp-content/uploads/2018/04/55-population-report-FINAL.pdf

34.

Ohr

Jeong

Saul

(2017). Cultural and religious beliefs and values, and their impact on preferences for end-of-life care among four ethnic groups of community-dwelling older persons. Journal of Clinical Nursing, 26(11–12), 1681–1689. doi:10.1111/jocn.13572

35.

Periyakoil

V. S.

Neri

Kraemer

(2016). Patient-reported barriers to high-quality, end-of-life care: A multiethnic, multilingual, mixed-methods study. Journal of Palliative Medicine, 19(4), 373–379. doi:10.1089/jpm.2015.0403

36.

Pruchno

Cartwright

F. P.

Wilson-Genderson

(2009). The effects of race on patient preferences and spouse substituted judgments. The International Journal of Aging and Human Development, 69(1), 31–54. doi:10.2190/AG.69.1.c

37.

Rao

J. K.

Anderson

L. A.

Lin

F. C.

Laux

J. P.

(2014). Completion of advance directives among US consumers. American Journal of Preventive Medicine, 46(1), 65–70. doi:10.1016/j.amepre.2013.09.008

38.

Sabatino

C. P.

(2010). The evolution of health care advance planning law and policy. The Milbank Quarterly, 88(2), 211–239. doi:10.1111/j.1468-0009.2010.00596.x

39.

Shalowitz

D. I.

Garrett-Mayer

Wendler

(2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5), 493–497. doi:10.1001/archinte.166.5.493

40.

Sharma

R. K.

Khosla

Tulsky

J. A.

Carrese

J. A.

(2012). Traditional expectations versus US realities: First- and second-generation Asian Indian perspectives on end-of-life care. Journal of General Internal Medicine, 27(3), 311–317. doi:10.1007/s11606-011-1890-7

41.

Silveira

M. J.

Kim

S. Y.

Langa

K. M.

(2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362(13), 1211–1218. doi:10.1056/NEJMsa0907901

42.

Sun

(2012). Chinese Americans and health: The impact of culture on disease prevention and management. In Yoo

G. J.

M. N.

Oda

A. Y.

(Eds), Handbook of Asian American health (pp. 23–46). New York, NY: Springer Science & Business Media.

43.

Sun

Bui

Tsoh

J. Y.

Gildengorin

Chan

Cheng

, . . . Nguyen

(2017). Efficacy of a church-based, culturally tailored program to promote completion of advance directives among Asian Americans. Journal of Immigrant and Minority Health, 19(2), 381–391. doi:10.1007/s10903-016-0365-7

44.

Vincent

G. K.

Velkoff

V. A.

(2010). The next four decades: The older population in the United States: 2010 to 2050: Population estimates and projections. Retrieved from http://www.census.gov/prod/2010pubs/p25-1138.pdf

45.

Waite

K. R.

Federman

A. D.

McCarthy

D. M.

Sudore

Curtis

L. M.

Baker

D. W.

, . . . Paasche-Orlow

M. K.

(2013). Literacy and race as risk factors for low rates of advance directives in older adults. Journal of the American Geriatrics Society, 61(3), 403–406. doi:10.1111/jgs.12134

46.

Zhang

Wright

A. A.

Huskamp

H. A.

Nilsson

M. E.

Maciejewski

M. L.

Earle

C. C.

, . . . Prigerson

H. G.

(2009). Health care costs in the last week of life: Associations with end-of-life conversations. Archives of Internal Medicine, 169(5), 480–488. doi:10.1001/archinternmed.2008.587