Since the implementation of the Patient Self-Determination Act (1990), extensive efforts have been made to encourage advance care planning (ACP) and advance directive completion. ACP is “a process that involves preparing for future medical decisions in the hypothetical event that individuals are no longer able to speak for themselves when those decisions need to be made” (Levi & Green, 2010, p. 4). An advance directive, a component of ACP, allows individuals to express their wishes and preferences related to end-of-life (EOL) care (McCune, 2014). Approximately 18% to 36% of American individuals have an advance directive (U.S. Department of Health and Human Services [USDHHS], 2008). Although the dominant American culture embraces autonomy in decision-making, Chinese American individuals, one of the fastest growing minority populations in the United States (Pew Research Center, 2013), place value on family participation in decisions (Fischer, Sauaia, Min, & Kutner, 2012).
A study of 82 community-dwelling Chinese American older adults found EOL-related discussions difficult and many had no knowledge of advance directives (National Hospice and Palliative Care Organization [NHPCO], 2009). Likewise, a study of Chinese individuals discovered that only three of 100 participants had some advance directive knowledge (Fung, Lam, & Lui, 2010). Despite these educational needs, few studies are specific to Chinese American individuals and advance directives or ACP (Lee, Hinderer, & Kehl, 2014). Lack of knowledge about advance directives is often cited as the reason for non-completion (Durbin, Fish, Bachman, & Smith, 2010). Community-dwelling adults preferred advance directive education by health care providers as opposed to non-health care community members (Detering, Hancock, Reade, & Silvester, 2010). Understanding and incorporating cultural values and preferences into advance directive educational interventions increased advance directive completion among diverse cultural groups (Zager & Yancy, 2011).
The purpose of the current study was to assess whether a community-based, culturally sensitive, nurse-led seminar would increase knowledge and subsequent ACP engagement in Chinese American adults. The specific aims of the study were to (a) explore the effectiveness of a culturally sensitive seminar for Chinese American adults on advance directive knowledge, advance directive completion, and ACP discussions; and (b) explore the relationship between demographic variables (e.g., age, sex, educational level), advance directive completion, and ACP discussions in Chinese American adults. The current study bridges an important gap regarding ACP and adds to the body of knowledge about ACP and advance directives in Chinese American adults and the role of nurses in ACP education.
A repeated-measures pre–posttest design was used. A university committee on human research approved the study.
Sample and Recruitment
A convenience sample of Chinese American adults was drawn from one of the largest Chinese community organizations in the Washington, D.C. metropolitan area. This well-established, non-profit organization has more than 2,000 members. Participants were recruited using flyers, advertisements in a local Chinese newspaper, and through word-of-mouth. Inclusion criteria were individuals who (a) self-identified as Chinese American, (b) were able to read and understand Chinese and/or English, and (c) were at least 18 years old. Seventy-two participants were recruited.
The instruments used in the current study included a background survey, the Advance Directives Knowledge Survey (ADKS), and the Advance Directives Questionnaire (ADQ). Instruments were developed specifically for the current study, as the researchers were unable to find established instruments that assessed advance directive knowledge and completion. The instruments were based on literature review, expert opinion, and seminar content. All instruments were bilingual (English and Chinese) and back-translated by two separate individuals fluent in both languages (M.C.L., Enyue Lu). The background survey collected data on demographics and previous EOL experiences. The 11-item, multiple choice ADKS examined advance directive knowledge. Participants were to select agree, disagree, or don’t know for each question. Incorrect and don’t know responses were given a score of 0, correct responses were given a score of 1, and total scores were summed. Total scores ranged from 0 to 11, with higher scores indicating greater understanding of advance directives. Cronbach’s alpha was 0.6.
The 10-item ADQ explored ACP engagement, advance directive completion, and perceived seminar effectiveness. The questionnaire included seven multiple choice questions with either yes/no or Likert-type (0 = not likely to 3 = very likely) responses and three open-ended questions. Sample questions included: “Have you ever spoken to your family or friends about your end-of-life wishes?” and “How likely are you to complete an advance directive?”
A culturally sensitive, 1-hour, nurse-led seminar on advance directives was developed and implemented in a Chinese community center. To accommodate multiple participants, two identical seminars were held in January 2013. All participants were given bilingual materials (i.e., Chinese and English) that included the informed consent, research surveys, and a copy of the Five Wishes, a form of an advance directive known as a living will (Aging with Dignity, n.d.). The seminar was presented in English and translated into Chinese.
Prior to the start of the seminar, the purpose of the study and informed consent were addressed. Immediately before the seminar began (Time 1), participants completed paper-and-pencil surveys that included the background survey, ADKS, and ADQ. The seminar used a multimodal educational method, which included a bilingual PowerPoint® presentation on advance directives. Using the Five Wishes (Aging with Dignity, n.d.) as a tool, the seminar incorporated a step-by-step, hands-on guide of the advance directive completion process. The seminar ended with a question-and-answer session. Chinese culture was integrated using common Chinese phrases and terms, incorporating Chinese values, and approaching ACP as a family process. The researchers wanted participants to familiarize themselves with the ACP process and components of an advance directive; they did not expect participants to complete an advance directive at the seminar. Immediately after the seminar (Time 2), participants completed the ADKS and ADQ. One month after the seminar (Time 3), the ADKS and ADQ were mailed to participants. IBM SPSS Statistics version 19.0 was used for data analysis.
The overall response rate was 99% (N = 71) immediately before the seminar (Time 1), 100% (N = 72) immediately after the seminar (Time 2), and 88% (N = 63) 1 month later (Time 3). Average age of the participants was 61.1 (range = 32 to 87; SD = 12.2 years). More than one half of the sample were women (63.9%, n = 46) and born in China (65.3%, n = 47). One participant had been on life support, one had acted as a surrogate decision maker, and one had made EOL decisions for someone else.
Mean knowledge scores were 7.11 (SD = 1.98) before the seminar (Time 1), 9.20 (SD = 1.07) immediately after the seminar (Time 2), and 9.22 (SD = 1.17) at 1-month follow-up (Time 3). A significant increase of advance directive knowledge was noted between Time 1 and Time 2 (t  = −8.380, p < 0.001), with no change in knowledge scores between Time 2 and Time 3 (p > 0.05). Pre-seminar (Time 1) knowledge about individual concepts related to ACP and advance directives was lower than post-seminar (Time 2) knowledge (Table).
Results of the Advance Directives Knowledge Survey (ADKS) Before (Time 1) and Immediately after (Time 2) the Seminar
Of the 72 participants, 69.4% (n = 50) reported they had not completed an advance directive before attending the seminar and 62.5% (n = 45) did not have previous ACP discussions. Of the 50 individuals who did not have an advance directive previously, 20% (n = 10) completed an advance directive 1 month later (Time 3). Of the 45 individuals who did not have a previous ACP discussion, 35.6% (n = 16) reported having an ACP discussion at Time 3.
Repeated measures analysis of variance examined the effect of time on advance directive knowledge as assessed by the ADKS at pre-intervention (Time 1), immediately after intervention (Time 2), and 1 month after intervention (Time 3). Significant differences were noted in ADKS scores according to time (F[1.42, 174.8] = 45.95, p < 0.001). Contrasts revealed that ADKS scores were significantly higher at Time 2 than Time 1 (p < 0.001). No significant difference was noted between ADKS scores from Time 2 to Time 3 (p = 0.985). At Time 3, increased age correlated with advance directive completion (r = 0.397, p = 0.001) and ACP discussions (r = 0.295, p = 0.019). Gender was related to ACP discussions only (chi-square = 4.67, p = 0.03). The percentage of participants with completed advance directives and ACP discussions did not differ with educational level (p > 0.05). Most (90.3%, n = 65) participants reported the seminar increased intention to complete an advance directive, and 86.1% (n = 62) reported the seminar was useful. One participant reported advance directives were not important.
Overall, Chinese American adults in the current study were not averse to discussing ACP and advance directives. Studies of Chinese older adults (Jeong, Higgins, & McMillan, 2009; Mok, Ting, & Lau, 2010) supported the current study’s finding that this group is not averse to discussing EOL issues. The current study’s survey response rate speaks to the level of motivation in this group of Chinese American adults regarding ACP and advance directive engagement.
The majority of participants were from mainland China. The concepts of ACP and advance directives are not well known in China (NHPCO, 2013), as reflected in the ADKS scores. The seminar improved participant advance directive knowledge, and knowledge was retained 1 month later. However, more than one half of participants were still confused about the decision-making ability of family once an advance directive is in place. Chinese culture is family-centered and becoming a burden is of major concern (NHPCO, 2009). Chinese individuals may need additional reassurance of family participation in decisions and education that advance directives are not financial documents. Other strategies may be needed to further clarify misconceptions, as knowledge is a major factor in advance directive non-completion (Johnson, Zhao, Newby, Granger, & Granger, 2012).
Prior to the seminar, 30% of participants had an advance directive, which was comparable to the 18% to 36% completion rates in the U.S. population (USDHHS, 2008). Individuals with an advance directive may be more likely to attend an ACP seminar and may be more interested in ACP. In the current study sample, age and education may have contributed to the high pre-seminar advance directive completion rate. Previous research demonstrates that advance directive completion increases with age (Johnson et al., 2012). The current findings suggest that older individuals are interested in ACP and advance directive education even when they have an advance directive. Repeated discussions about advance directives are an effective way to increase positive patient, family, and nurse interaction with regard to ACP (Kossman, 2014).
Significant increases in advance directive completion and discussions supported the importance of offering a nurse-led educational seminar to promote ACP. Although overall advance directive completion rates were not as high as anticipated, approximately one half of the sample had an ACP discussion. Similarly, a study of 187 adults found that 44% of those who did not have an advance directive had a conversation about ACP (Jackson, Rolnick, Asche, & Heinrich, 2009). Having ACP discussions with loved ones may be more important than the advance directive document itself (Sudore et al., 2008).
The seminar was well received, supporting the perceived usefulness of the nurse-led intervention for Chinese American adults. Unlike other studies, the one-time, multi-modal educational intervention significantly increased advance directive knowledge, completion, and ACP discussions in Chinese American adults (Durbin et al., 2010; USDHHS, 2008). A convenience sample was used, which limited generalizability, as members of the community center may differ from non-members. Social desirability cannot be ruled out, and the level of acculturation was not measured in the current sample. The current study used translated instruments. Although instruments were translated and back-translated, they have not been validated in any other study; therefore, future studies are needed to validate instrument reliability and validity. The ADKS had a low alpha, indicating the need for further testing. Despite these limitations, the current study has implications for nurses and advance practice nurses to promote ACP in the Chinese American community.
Nurses can make significant contributions in the ACP process. Providing nurse-led community education programs are an easy and effective way to promote ACP in older adults (Hinderer & Lee, 2014). Using culturally sensitive approaches to health education can help overcome some of the barriers that exist in ACP in individuals from diverse cultural backgrounds (Kossman, 2014; NHPCO, 2009). Nurses can partner with community organizations to promote ACP in diverse cultural groups and facilitate the communication among health care providers, patients, and family members.
Recommendations and Conclusion
Promotion of ACP and advance directives among community-dwelling individuals through educational interventions holds promise for increasing ACP and advance directive completion. Future studies should include larger samples and a quasiexperimental method to test the effects of nursing interventions in the community. In addition, longitudinal designs are needed to examine the effectiveness of advance directives and ACP on patient outcomes and satisfaction.
- Aging With Dignity. (n.d.). Five wishes. Retrieved from http://www.agingwithdignity.org/five-wishes.php
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- Patient Self-Determination Act of 1990, H.R. 5067, 101st Cong. (1990).
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Results of the Advance Directives Knowledge Survey (ADKS) Before (Time 1) and Immediately after (Time 2) the Seminar
|Answered Correctly (n, %)|
|ADKS Item||Pre-Seminar (Time 1) (N = 71)||Post-Seminar (Time 2) (N = 72)|
|Advance directives or living wills are forms of advance care planning.||61 (86)||71 (98.6)|
|Five Wishesa is a type of living will.||35 (49.3)||62 (86.1)|
|Five Wishes is an acceptable living will or advance directive in the state of Maryland.||31 (43.7)||67 (93.1)|
|Once I write a living will or advance directive it cannot be changed.||47 (66.2)||64 (88.9)|
|If I have a living will or advance directive, my family will no longer be able to make any decisions for me.||22 (31)||21 (29.2)|
|My living will or advance directive does not go into effect until I am not able to make decisions for myself.||58 (81.7)||70 (97.2)|
|An advance directive or living will is a document that outlines financial responsibilities of my family in the case of my severe illness.||8 (11.3)||31 (43.1)|
|An advance directive or living will is a document that tells my family and health care providers the type of care I would want if I were unable to make decisions for myself.||62 (87.3)||70 (97.2)|
|Talking to my family about the kinds of treatment I would want if I could not make decisions for myself is very important.||67 (94.3)||72 (100)|
|My doctor can change my advance directive or living will without my consent.||53 (74.6)||68 (94.4)|
|I can use an advance directive or living will to designate the individual (or surrogate) I would like to make decisions for me if I am unable to make decisions for myself.||61 (89)||66 (91.7)|