587586
research-article2015
TCNXXX10.1177/1043659615587586Journal of Transcultural NursingPark and Song
Research Department
Predictors of Agreement With Writing Advance Directives Among Older Korean Adults
Journal of Transcultural Nursing 1–9 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043659615587586 tcn.sagepub.com
Jaewon Park, MSN, RN1, and Jun-Ah Song, PhD, RN1
Abstract Purpose: To determine the predictors of agreement with writing advance directives (ADs) among older Korean adults. Design: This was a secondary analysis of a study that compared the differences in knowledge, experience, and preference about ADs between community and facility-dwelling older adults. Data were collected through self-reported questionnaires. In this study, after 25 cases were excluded from the original sample (N = 181) for incomplete data, a sample of 156 was analyzed using multiple logistic regression analysis. Results: Older adults’ experiences with having thought about lifesustaining treatments, odds ratio (OR) = 4.02, 95% confidence interval (CI) [1.56, 10.38], agreements with legalization of ADs, OR = 4.68, 95% CI [1.69, 12.96], and wishes to obtain information about medical status, OR = 3.78, 95% CI [1.66, 8.64], were identified as the predictors of agreement with writing ADs. Implications for Practice: Discussion channels and educational programs about ADs should be developed for older Korean adults. Keywords advance directives, aged, terminal care Dignity of human beings is an essential concept related to end-of-life care, as most people hope to maintain their dignity during the last days of life (Coenen, Doorenbos, & Wilson, 2007). However, retaining dignity at the end of life does not seem to be easy, especially when being treated for chronic health conditions. Matters involving meaningless prolongation of lives without considering the patient’s quality of life (Kossman, 2014; Kwon et al., 2012), discordant opinions regarding the medical care plan among the patient, family members, and health care professionals (Woo & Kim, 2013), and the burden placed on family members from having to decide between end-of-life care options have been reported as complicating factors (S. M. Kim, Hong, Eun, & Koh, 2012). Advance directives (ADs) are written documents specifying medical treatments that people want or do not want to receive in the event where the ability to communicate or make decisions is lost due to a progression of illness (Miller, 2009; Zager & Yancy, 2011). Completion of an AD is important to preserve an individual’s dignity and self-determination because ADs allow individuals to participate in the decisionmaking process, express their wishes about medical care, and thus receive medical treatments based on those wishes (Brown, Johnston, & Ostlund, 2011; Coenen et al., 2007; Silveira, Kim, & Langa, 2010). ADs are legal documents and are used in the United States, Australia, and many countries in Europe and Asia (S. M. Kim et al., 2012; Yoon, Choi, & Hyun, 2011). However, the concept of ADs is rather new in Korean society and was not discussed seriously until 2009.
In May 2009, the Korean Supreme Court permitted the removal of a respirator from an older patient who was in a persistent vegetative state (Constitutional Court of Korea, 2009). This case was the first approval of patient autonomy in making medical decisions and the withdrawal of meaningless life-sustaining treatments. It triggered a general insistence on the necessity of ADs. Since then, the topic of ADs has been discussed in Korea, along with a movement to preserve the dignity of individuals at the end of their lives (S. H. Kim, 2011; Yu, Chae, Choi, & Kim, 2013). Nevertheless, the use of ADs in Korea is a subject of considerable debate due to the following issues. First, there continues to be a lack of social agreement on the concept of ADs (J. S. Kim, 2012). Second, standardized documentation forms for writing ADs and relevant regulations or laws about ADs have not yet been developed (S. H. Kim, 2011; S. M. Kim et al., 2012). In response, a number of large hospitals have developed and used their own ADs forms (Yoon et al., 2011). Third, most Koreans are unaware of ADs because patients are only provided with them when they are hospitalized for hospice care or are near death (Heo, 2009; Hong, 2010). 1
Korea University, Seoul, South Korea
Corresponding Author: Jun-Ah Song, College of Nursing, Korea University, 145 Anamro, Sungbukgu, Seoul 136-705, South Korea. Email: [email protected]
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When patients have expressed wishes, either verbally or through ADs after being hospitalized, the final decisions about end-of-life care are often made based on the family members’ wishes rather than on the patients’ instructions. Compliance of the wishes of patient’s AD was followed in only 7.9% of cases in which the patient had an AD (Yoon et al., 2011). Fourth, patients have generally been excluded from discussions about end-of-life care, including whether or not they are to receive or maintain life-sustaining treatments. This is because the responsibility for such decision making has often been placed on family members and not on the patients themselves (Heo, 2009; S. M. Kim et al., 2012). In such cases, family members experience difficulties or conflicts in decision making because they do not know the patients’ needs for life-sustaining treatments and thus tend to comply with their physicians’ advice (Jo & An, 2012; Woo & Kim, 2013). Finally, Korean nurses are seldom invited to participate in the decision-making process, despite the fact that they are knowledgeable of their patients’ needs and thus able to provide optimal nursing care for them (Woo & Kim, 2013). Discussions about patients’ end-of-life care usually occur between physicians and family members. The nurses are either informed of the final decisions afterward or they learn of them when family members come to ask for an AD form (Woo & Kim, 2013). ADs are particularly meaningful for older adults because frailty caused by cancer or chronic diseases (such as heart diseases and diabetes) brings older adults closer to death (J. S. Kim, 2012) and cognitive impairments (such as dementia) prevent them from making decisions about their medical treatments (Golden, Corvea, Dang, Llorente, & Silverman, 2009). Previous studies conducted in other countries reported that many older adults believed that ADs aided with defining their wishes regarding medical treatments and helped in dealing with various problems during the end of their lives (Alano et al., 2010; Matzo, Hijjazi, & Outwater, 2008). Nurses who work in long-term care facilities also suggested that communication with older adults about their values regarding end-of-life care was important for maintaining dignity at the end of life (Periyakoil, Stevens, & Kraemer, 2013). Unfortunately, older Korean adults do not openly express their wishes about end-of-life care because discussions about death and dying have been prohibited in Korean society (Hong, 2010; J. S. Kim, 2012). It has been reported that older Korean adults want the power to decide on medical treatments if provided information about rights to decide on life-sustaining treatments and want to write ADs if the opportunity arises (J. S. Kim, 2012). Korean society has endeavored to introduce ADs, but academic discussions and scientific studies regarding ADs lack conclusive evidence to make decisions (Hong, 2010). Most of the studies have focused on the development of standardized forms for documenting ADs (Hong, 2010; S. M. Kim et
al., 2012; S. M. Kim, Hong, Hong, Kim, & Kim, 2013), examination of attitudes and preferences about do-not-resuscitate orders and/or life-sustaining treatments (M. H. Kim, Kang, & Kim, 2012; Woo & Kim, 2013; Yoon, 2009), or investigation of the perceptions, attitudes, and preferences regarding ADs among cancer patients, family members, health care providers, and healthy adults (S. H. Kim, 2011; S. Kim et al., 2012; Lee & Kim, 2010; Yu et al., 2013). There has been little information available regarding older adults’ knowledge, experience, preferences, and attitudes. Therefore, the purpose of this study was to investigate older Korean adults’ degree of agreement on writing ADs and to determine associated factors. The specific objectives were: (a) to identify the knowledge, experience, and preferences regarding ADs; (b) to examine the differences in the degree of agreement on writing ADs based on the participants’ demographic characteristics and knowledge, experience, and preferences regarding ADs; and (c) to identify the predictors of agreement with writing ADs.
Method This study was a secondary analysis using a cross-sectional survey design to identify the predictors of agreement with writing ADs among older Korean adults. The parent study was “Knowledge, Experience and Preference on Advance Directives Among Community and Facility Dwelling Elderly” (Park & Song, 2013). The purpose of the parent study was to compare the differences in knowledge, experience, and preference about ADs between community and facility-dwelling older adults in Korea. The parent study was approved by a university-based institutional review board. As a secondary analysis, the study was conducted to identify any significant factors that contributed to reaching an agreement when writing ADs in cases where the older Korean adult was unable to communicate or make decisions. Previous studies, which were conducted mostly in Western societies, suggested that factors such as demographic characteristics, knowledge, and experience were associated with completing ADs among older adults. Thus, this study also included those variables in the analysis.
Sample and Setting This study used a sample of 156 from the parent study, excluding 25 cases with incomplete responses. In the parent study, a convenience sample of 181 participants was recruited from four community centers (n = 95) and four nursing homes (n = 86) located in Seoul and Gyeonggi Province in South Korea. The data for the study were collected from the institutions that agreed to participate in the study. The director of nursing services or a social worker at each center introduced researchers to the participants who met the following criteria: (a) age ≥65 years, (b) free from dementia or cognitive impairment, (c) no psychiatric disorders, and (d) either
Downloaded from tcn.sagepub.com at UNIV OF CINCINNATI on June 4, 2016
3
Park and Song resides in a nursing home for more than 3 months or lives in their own home and relies on community centers.
Instrument The instrument for the parent study contained four sections consisting of 51 items: knowledge (9 items), experience (7 items), preferences regarding ADs (20 items), and demographic characteristics (15 items). It was developed based on two questionnaires used in previous studies and an “advance medical directives” documentation form used for hospice cancer patients in a university hospital in South Korea (Akabayashi, Slingsby, & Kai, 2003; Sam & Singer, 1993; Yoon, 2009). All the items from the three original instruments were reviewed and modified to suit the purpose of the parent study, and the content validity was evaluated by three experts in geriatrics, gerontology, and gerontological nursing. The reliability of the instrument was Cronbach’s α = .85. Among the 51 items used for the parent study, 23 were selected for the purpose of this study. Four of the items on knowledge asked whether the participants were familiar with the terms “life-sustaining treatments,” “living will (LW),” “durable power of attorney for health care (DPAHC),” and “ADs.” The participants were given three response options: “Yes, I know it,” “No, I don’t know it,” or “I’ve heard about it, but I am not sure.” The three questions on experience explored whether they had ever thought about or discussed the type of life-sustaining treatments they wanted, and whether they had ever thought about appointing decision makers for possible life-sustaining treatments. The participants had two response options: “Yes” or “No.” Seven of the items on preferences regarding ADs examined their agreement with and reasons for writing ADs, the form of ADs preferred, who they wanted for decision makers, and their opinions on the legalization of ADs and obtaining information about their medical status. Finally, nine of the demographic characteristics items included gender, age, marital status, residence type, religion, education, income, experience of pain, and perceived health status, which were reported to be associated with completing ADs (Alano et al., 2010; Duke, Thompson, & Hastie, 2007; Jackson, Rolnick, Asche, & Heinrich, 2009; Jones, Moss, & Harris-Kojetin, 2011; Ko & Lee, 2010; Pollack, Morhaim, & Williams, 2010).
Procedures Written consent was obtained from all participants for the parent study. Data were collected using self-reported questionnaires, which participants were encouraged to complete independently. If participants wanted to participate in the study but could not read or write, the researcher read the questions aloud and recorded the answers on their behalf. In those instances, the researcher did not include any additional explanation for the questions to avoid potentially influencing
the participant. About 40% of the participants required the researcher’s assistance to complete the questionnaire due to physical problems such as blurred vision, muscle weakness, or tremors. For the purpose of this study, which was to determine the predictors of agreement with writing ADs, the first question in the preferences regarding ADs section was used as a dependent variable (i.e., “Do you agree to write an AD in case you are incapable of communicating or making decisions due to illness or sudden accident?”). Responses of the dependent variable were categorized into two groups under “agree (including ‘strongly agree’)” and “disagree (including ‘strongly disagree’).” The other three items in the preferences section (i.e., the form of ADs preferred, opinion on the legalization of ADs, and opinion on obtaining information about medical status), four items in the knowledge section, three items in the experience section, and nine items on demographic characteristics were considered as possible independent variables.
Data Analysis Using IBM SPSS Statistics 20.0, descriptive statistics were calculated to analyze the participants’ demographic characteristics and their degree of knowledge, experience, and preferences regarding ADs. Chi-square tests were performed to examine whether there were differences between the group that agreed with and the group that disagreed with writing ADs based on their demographic characteristics, knowledge, experience, and preferences regarding ADs. A multiple logistic regression analysis was conducted using the backward technique to identify the predictors of agreement with writing ADs. All the independent variables were coded as dummy variables because they were not continuous variables. To determine the fitness of the model, the Hosmer–Lemeshow test for goodness of fit (p < .05) was used.
Results Demographic Characteristics The demographic characteristics of the participants are presented in Table 1. The average age was 79.12 years (SD = 7.20), 65.4% were women, 58.3% were unmarried, 44.9% had an elementary school education, and 49.4% resided at home.
Knowledge, Experience, and Preferences Regarding ADs The participants had little knowledge of and experience with ADs. Most of the participants answered that they did not know or were unsure about life-sustaining treatments (73.1%), LW (69.3%), DPAHC (79.5%), or ADs (93.6%). Regarding their experience with ADs, 67.3% of the
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Journal of Transcultural Nursing
Table 1. Characteristics of Participants (N = 156).
Table 2. Preferences Regarding Advance Directives (N = 156).
Variable
Variable
Gender Age (years) Marital status Residence type Religion Education Income per month (US$) Experience of pain during previous month Perceived health status
Category
n (%) or M (SD)
Men Women 65-74 75-84 ≥85 Total Married Unmarried Home Nursing home Yes No ≤Elementary school ≤Middle school ≤High school ≥College ≤1,000 1,010-2,000 ≥2,010 No pain
54 (34.6) 102 (65.4) 44 (28.2) 74 (47.4) 38 (24.4) 79.12 (7.20) 65 (41.7) 91 (58.3) 77 (49.4) 79 (50.6) 120 (76.9) 36 (23.1) 70 (44.9) 19 (12.2) 33 (21.2) 34 (21.8) 129 (82.7) 11 (7.1) 16 (10.3) 73 (46.8)
Mild pain Moderate pain Severe pain Poor Fair Good
21 (13.5) 31 (19.9) 31 (19.9) 43 (27.6) 57 (36.5) 56 (35.9)
participants had never thought about what life-sustaining treatments they would want, and 75.0% had never discussed the matter with another person. Furthermore, 75.6% had never thought about who would make the decisions regarding life-sustaining treatments other than themselves. The participants’ preferences regarding ADs are presented in Table 2. In terms of ADs, 59.0% of the participants agreed with writing ADs in case they were incapable of communicating or making decisions due to illnesses or sudden accidents. Fifty percent of the participants wanted LWs as the ADs forms. Most of those who chose DPAHCs or both as the ADs forms wanted their children to be their decision makers for life-sustaining treatments (85.9%). And 61.5% of the participants wanted to obtain information about their medical status. The most frequent reasons the participants agreed with writing ADs were “I do not wish to burden my family with end-of-life decisions (60.7%),” and “I want to decide for myself (60.7%),” followed by “I am aware that I could possibly lose my decision-making power due to illness (53.9%).” In contrast, frequent reasons the participants disagreed with writing ADs included “My family will make decisions when the time calls for it (66.7%),” “My physician will make decisions when the time calls for it (60.3%),” “At my present age, there is no need to consider such decisions (44.4%),” or “I have no information about ADs (30.2%).”
n (%)
Writing ADs in case of being incapable of communicating or making decisions Strongly agree 14 (9.0) Agree 78 (50.0) Disagree 64 (41.0) Strongly disagree 0 (0.0) The form of ADs preferred LW 78 (50.0) DPAHC 63 (40.4) Both 15 (9.6) Who?a (n = 78) Spouse 11 (14.1) Children 67 (85.9) Friend 1 (1.3) Lawyer 2 (2.6) Doctor 11 (14.1) Legalization of ADs Agree 56 (35.9) Disagree 19 (12.2) Not sure 81 (51.9) Obtaining information about medical status Want 96 (61.5) Do not want 60 (38.5) Note. ADs = advance directives; LW = living will; DPAHC = durable power of attorney for health care. a Only respondents who chose “DPAHC” or “Both” for the previous question were instructed to choose the person; multiple responses were allowed.
Predictors of Agreement With Writing ADs The variables that showed significant differences between groups of “agree” and “disagree” with writing ADs are presented in Table 3. These variables were entered into the multiple logistic regression models by using the backward technique to determine the factors associated with agreement with writing ADs. Five models were generated, but only one was chosen as the most stringent model. This model contained only the variables of the greatest statistical significance (p < .05). Variables that were omitted from the final model did not substantially affect the coefficients or the standard errors of the retained variables. Although a variable of “the form of ADs preferred” was included in the final model, it did not significantly predict agreement with writing ADs, irrespective of whether participants selected LW or DPAHC. Finally, it was observed that those who had thought about what life-sustaining treatments, they would want were more likely to agree with writing ADs than those who had not, odds ratio (OR) = 4.02, 95% confidence interval (CI) [1.56, 10.38]. The participants who supported the legalization of ADs were more likely to agree with writing ADs than those who answered, “I am not sure about the legalization of ADs,” OR = 4.68, 95% CI [1.69, 12.96]. Participants who wanted to know their medical status were
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Park and Song Table 3. Differences in Agreement With Writing Advance Directives by Demographic Characteristics, Knowledge, Experience, and Preferences (N = 156).
Variable
Agree
Disagree
n (%)
n (%)
Marital status Married 45 (69.2) Unmarried 47 (51.6) Education ≤Elementary school 30 (42.9) ≤Middle school 13 (68.4) ≤High school 23 (69.7) ≥College 26 (76.5) LSTs Yes 32 (76.2) No 53 (53.0) Not sure 7 (50.0) Having thought about LSTs Yes 41 (80.4) No 51 (48.6) Having thought about appointing decision makers Yes 28 (73.7) No 64 (54.2) The form of ADs preferred LW 57 (73.1) DPAHC 22 (34.9) Both 13 (86.7) Legalization of ADs Agree 49 (87.5) Disagree 9 (47.4) Not sure 34 (42.0) Obtaining information about medical status Want 70 (72.9) Do not want 22 (36.7)
χ2
p
20 (30.8) 44 (48.4)
4.85
.028
40 (57.1) 6 (31.6) 10 (30.3) 8 (23.5)
14.09
.003
10 (23.8) 47 (47.0) 7 (50.0)
7.09
.029
10 (19.6) 54 (51.4)
14.37
research-article2015
TCNXXX10.1177/1043659615587586Journal of Transcultural NursingPark and Song
Research Department
Predictors of Agreement With Writing Advance Directives Among Older Korean Adults
Journal of Transcultural Nursing 1–9 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043659615587586 tcn.sagepub.com
Jaewon Park, MSN, RN1, and Jun-Ah Song, PhD, RN1
Abstract Purpose: To determine the predictors of agreement with writing advance directives (ADs) among older Korean adults. Design: This was a secondary analysis of a study that compared the differences in knowledge, experience, and preference about ADs between community and facility-dwelling older adults. Data were collected through self-reported questionnaires. In this study, after 25 cases were excluded from the original sample (N = 181) for incomplete data, a sample of 156 was analyzed using multiple logistic regression analysis. Results: Older adults’ experiences with having thought about lifesustaining treatments, odds ratio (OR) = 4.02, 95% confidence interval (CI) [1.56, 10.38], agreements with legalization of ADs, OR = 4.68, 95% CI [1.69, 12.96], and wishes to obtain information about medical status, OR = 3.78, 95% CI [1.66, 8.64], were identified as the predictors of agreement with writing ADs. Implications for Practice: Discussion channels and educational programs about ADs should be developed for older Korean adults. Keywords advance directives, aged, terminal care Dignity of human beings is an essential concept related to end-of-life care, as most people hope to maintain their dignity during the last days of life (Coenen, Doorenbos, & Wilson, 2007). However, retaining dignity at the end of life does not seem to be easy, especially when being treated for chronic health conditions. Matters involving meaningless prolongation of lives without considering the patient’s quality of life (Kossman, 2014; Kwon et al., 2012), discordant opinions regarding the medical care plan among the patient, family members, and health care professionals (Woo & Kim, 2013), and the burden placed on family members from having to decide between end-of-life care options have been reported as complicating factors (S. M. Kim, Hong, Eun, & Koh, 2012). Advance directives (ADs) are written documents specifying medical treatments that people want or do not want to receive in the event where the ability to communicate or make decisions is lost due to a progression of illness (Miller, 2009; Zager & Yancy, 2011). Completion of an AD is important to preserve an individual’s dignity and self-determination because ADs allow individuals to participate in the decisionmaking process, express their wishes about medical care, and thus receive medical treatments based on those wishes (Brown, Johnston, & Ostlund, 2011; Coenen et al., 2007; Silveira, Kim, & Langa, 2010). ADs are legal documents and are used in the United States, Australia, and many countries in Europe and Asia (S. M. Kim et al., 2012; Yoon, Choi, & Hyun, 2011). However, the concept of ADs is rather new in Korean society and was not discussed seriously until 2009.
In May 2009, the Korean Supreme Court permitted the removal of a respirator from an older patient who was in a persistent vegetative state (Constitutional Court of Korea, 2009). This case was the first approval of patient autonomy in making medical decisions and the withdrawal of meaningless life-sustaining treatments. It triggered a general insistence on the necessity of ADs. Since then, the topic of ADs has been discussed in Korea, along with a movement to preserve the dignity of individuals at the end of their lives (S. H. Kim, 2011; Yu, Chae, Choi, & Kim, 2013). Nevertheless, the use of ADs in Korea is a subject of considerable debate due to the following issues. First, there continues to be a lack of social agreement on the concept of ADs (J. S. Kim, 2012). Second, standardized documentation forms for writing ADs and relevant regulations or laws about ADs have not yet been developed (S. H. Kim, 2011; S. M. Kim et al., 2012). In response, a number of large hospitals have developed and used their own ADs forms (Yoon et al., 2011). Third, most Koreans are unaware of ADs because patients are only provided with them when they are hospitalized for hospice care or are near death (Heo, 2009; Hong, 2010). 1
Korea University, Seoul, South Korea
Corresponding Author: Jun-Ah Song, College of Nursing, Korea University, 145 Anamro, Sungbukgu, Seoul 136-705, South Korea. Email: [email protected]
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Journal of Transcultural Nursing
When patients have expressed wishes, either verbally or through ADs after being hospitalized, the final decisions about end-of-life care are often made based on the family members’ wishes rather than on the patients’ instructions. Compliance of the wishes of patient’s AD was followed in only 7.9% of cases in which the patient had an AD (Yoon et al., 2011). Fourth, patients have generally been excluded from discussions about end-of-life care, including whether or not they are to receive or maintain life-sustaining treatments. This is because the responsibility for such decision making has often been placed on family members and not on the patients themselves (Heo, 2009; S. M. Kim et al., 2012). In such cases, family members experience difficulties or conflicts in decision making because they do not know the patients’ needs for life-sustaining treatments and thus tend to comply with their physicians’ advice (Jo & An, 2012; Woo & Kim, 2013). Finally, Korean nurses are seldom invited to participate in the decision-making process, despite the fact that they are knowledgeable of their patients’ needs and thus able to provide optimal nursing care for them (Woo & Kim, 2013). Discussions about patients’ end-of-life care usually occur between physicians and family members. The nurses are either informed of the final decisions afterward or they learn of them when family members come to ask for an AD form (Woo & Kim, 2013). ADs are particularly meaningful for older adults because frailty caused by cancer or chronic diseases (such as heart diseases and diabetes) brings older adults closer to death (J. S. Kim, 2012) and cognitive impairments (such as dementia) prevent them from making decisions about their medical treatments (Golden, Corvea, Dang, Llorente, & Silverman, 2009). Previous studies conducted in other countries reported that many older adults believed that ADs aided with defining their wishes regarding medical treatments and helped in dealing with various problems during the end of their lives (Alano et al., 2010; Matzo, Hijjazi, & Outwater, 2008). Nurses who work in long-term care facilities also suggested that communication with older adults about their values regarding end-of-life care was important for maintaining dignity at the end of life (Periyakoil, Stevens, & Kraemer, 2013). Unfortunately, older Korean adults do not openly express their wishes about end-of-life care because discussions about death and dying have been prohibited in Korean society (Hong, 2010; J. S. Kim, 2012). It has been reported that older Korean adults want the power to decide on medical treatments if provided information about rights to decide on life-sustaining treatments and want to write ADs if the opportunity arises (J. S. Kim, 2012). Korean society has endeavored to introduce ADs, but academic discussions and scientific studies regarding ADs lack conclusive evidence to make decisions (Hong, 2010). Most of the studies have focused on the development of standardized forms for documenting ADs (Hong, 2010; S. M. Kim et
al., 2012; S. M. Kim, Hong, Hong, Kim, & Kim, 2013), examination of attitudes and preferences about do-not-resuscitate orders and/or life-sustaining treatments (M. H. Kim, Kang, & Kim, 2012; Woo & Kim, 2013; Yoon, 2009), or investigation of the perceptions, attitudes, and preferences regarding ADs among cancer patients, family members, health care providers, and healthy adults (S. H. Kim, 2011; S. Kim et al., 2012; Lee & Kim, 2010; Yu et al., 2013). There has been little information available regarding older adults’ knowledge, experience, preferences, and attitudes. Therefore, the purpose of this study was to investigate older Korean adults’ degree of agreement on writing ADs and to determine associated factors. The specific objectives were: (a) to identify the knowledge, experience, and preferences regarding ADs; (b) to examine the differences in the degree of agreement on writing ADs based on the participants’ demographic characteristics and knowledge, experience, and preferences regarding ADs; and (c) to identify the predictors of agreement with writing ADs.
Method This study was a secondary analysis using a cross-sectional survey design to identify the predictors of agreement with writing ADs among older Korean adults. The parent study was “Knowledge, Experience and Preference on Advance Directives Among Community and Facility Dwelling Elderly” (Park & Song, 2013). The purpose of the parent study was to compare the differences in knowledge, experience, and preference about ADs between community and facility-dwelling older adults in Korea. The parent study was approved by a university-based institutional review board. As a secondary analysis, the study was conducted to identify any significant factors that contributed to reaching an agreement when writing ADs in cases where the older Korean adult was unable to communicate or make decisions. Previous studies, which were conducted mostly in Western societies, suggested that factors such as demographic characteristics, knowledge, and experience were associated with completing ADs among older adults. Thus, this study also included those variables in the analysis.
Sample and Setting This study used a sample of 156 from the parent study, excluding 25 cases with incomplete responses. In the parent study, a convenience sample of 181 participants was recruited from four community centers (n = 95) and four nursing homes (n = 86) located in Seoul and Gyeonggi Province in South Korea. The data for the study were collected from the institutions that agreed to participate in the study. The director of nursing services or a social worker at each center introduced researchers to the participants who met the following criteria: (a) age ≥65 years, (b) free from dementia or cognitive impairment, (c) no psychiatric disorders, and (d) either
Downloaded from tcn.sagepub.com at UNIV OF CINCINNATI on June 4, 2016
3
Park and Song resides in a nursing home for more than 3 months or lives in their own home and relies on community centers.
Instrument The instrument for the parent study contained four sections consisting of 51 items: knowledge (9 items), experience (7 items), preferences regarding ADs (20 items), and demographic characteristics (15 items). It was developed based on two questionnaires used in previous studies and an “advance medical directives” documentation form used for hospice cancer patients in a university hospital in South Korea (Akabayashi, Slingsby, & Kai, 2003; Sam & Singer, 1993; Yoon, 2009). All the items from the three original instruments were reviewed and modified to suit the purpose of the parent study, and the content validity was evaluated by three experts in geriatrics, gerontology, and gerontological nursing. The reliability of the instrument was Cronbach’s α = .85. Among the 51 items used for the parent study, 23 were selected for the purpose of this study. Four of the items on knowledge asked whether the participants were familiar with the terms “life-sustaining treatments,” “living will (LW),” “durable power of attorney for health care (DPAHC),” and “ADs.” The participants were given three response options: “Yes, I know it,” “No, I don’t know it,” or “I’ve heard about it, but I am not sure.” The three questions on experience explored whether they had ever thought about or discussed the type of life-sustaining treatments they wanted, and whether they had ever thought about appointing decision makers for possible life-sustaining treatments. The participants had two response options: “Yes” or “No.” Seven of the items on preferences regarding ADs examined their agreement with and reasons for writing ADs, the form of ADs preferred, who they wanted for decision makers, and their opinions on the legalization of ADs and obtaining information about their medical status. Finally, nine of the demographic characteristics items included gender, age, marital status, residence type, religion, education, income, experience of pain, and perceived health status, which were reported to be associated with completing ADs (Alano et al., 2010; Duke, Thompson, & Hastie, 2007; Jackson, Rolnick, Asche, & Heinrich, 2009; Jones, Moss, & Harris-Kojetin, 2011; Ko & Lee, 2010; Pollack, Morhaim, & Williams, 2010).
Procedures Written consent was obtained from all participants for the parent study. Data were collected using self-reported questionnaires, which participants were encouraged to complete independently. If participants wanted to participate in the study but could not read or write, the researcher read the questions aloud and recorded the answers on their behalf. In those instances, the researcher did not include any additional explanation for the questions to avoid potentially influencing
the participant. About 40% of the participants required the researcher’s assistance to complete the questionnaire due to physical problems such as blurred vision, muscle weakness, or tremors. For the purpose of this study, which was to determine the predictors of agreement with writing ADs, the first question in the preferences regarding ADs section was used as a dependent variable (i.e., “Do you agree to write an AD in case you are incapable of communicating or making decisions due to illness or sudden accident?”). Responses of the dependent variable were categorized into two groups under “agree (including ‘strongly agree’)” and “disagree (including ‘strongly disagree’).” The other three items in the preferences section (i.e., the form of ADs preferred, opinion on the legalization of ADs, and opinion on obtaining information about medical status), four items in the knowledge section, three items in the experience section, and nine items on demographic characteristics were considered as possible independent variables.
Data Analysis Using IBM SPSS Statistics 20.0, descriptive statistics were calculated to analyze the participants’ demographic characteristics and their degree of knowledge, experience, and preferences regarding ADs. Chi-square tests were performed to examine whether there were differences between the group that agreed with and the group that disagreed with writing ADs based on their demographic characteristics, knowledge, experience, and preferences regarding ADs. A multiple logistic regression analysis was conducted using the backward technique to identify the predictors of agreement with writing ADs. All the independent variables were coded as dummy variables because they were not continuous variables. To determine the fitness of the model, the Hosmer–Lemeshow test for goodness of fit (p < .05) was used.
Results Demographic Characteristics The demographic characteristics of the participants are presented in Table 1. The average age was 79.12 years (SD = 7.20), 65.4% were women, 58.3% were unmarried, 44.9% had an elementary school education, and 49.4% resided at home.
Knowledge, Experience, and Preferences Regarding ADs The participants had little knowledge of and experience with ADs. Most of the participants answered that they did not know or were unsure about life-sustaining treatments (73.1%), LW (69.3%), DPAHC (79.5%), or ADs (93.6%). Regarding their experience with ADs, 67.3% of the
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Journal of Transcultural Nursing
Table 1. Characteristics of Participants (N = 156).
Table 2. Preferences Regarding Advance Directives (N = 156).
Variable
Variable
Gender Age (years) Marital status Residence type Religion Education Income per month (US$) Experience of pain during previous month Perceived health status
Category
n (%) or M (SD)
Men Women 65-74 75-84 ≥85 Total Married Unmarried Home Nursing home Yes No ≤Elementary school ≤Middle school ≤High school ≥College ≤1,000 1,010-2,000 ≥2,010 No pain
54 (34.6) 102 (65.4) 44 (28.2) 74 (47.4) 38 (24.4) 79.12 (7.20) 65 (41.7) 91 (58.3) 77 (49.4) 79 (50.6) 120 (76.9) 36 (23.1) 70 (44.9) 19 (12.2) 33 (21.2) 34 (21.8) 129 (82.7) 11 (7.1) 16 (10.3) 73 (46.8)
Mild pain Moderate pain Severe pain Poor Fair Good
21 (13.5) 31 (19.9) 31 (19.9) 43 (27.6) 57 (36.5) 56 (35.9)
participants had never thought about what life-sustaining treatments they would want, and 75.0% had never discussed the matter with another person. Furthermore, 75.6% had never thought about who would make the decisions regarding life-sustaining treatments other than themselves. The participants’ preferences regarding ADs are presented in Table 2. In terms of ADs, 59.0% of the participants agreed with writing ADs in case they were incapable of communicating or making decisions due to illnesses or sudden accidents. Fifty percent of the participants wanted LWs as the ADs forms. Most of those who chose DPAHCs or both as the ADs forms wanted their children to be their decision makers for life-sustaining treatments (85.9%). And 61.5% of the participants wanted to obtain information about their medical status. The most frequent reasons the participants agreed with writing ADs were “I do not wish to burden my family with end-of-life decisions (60.7%),” and “I want to decide for myself (60.7%),” followed by “I am aware that I could possibly lose my decision-making power due to illness (53.9%).” In contrast, frequent reasons the participants disagreed with writing ADs included “My family will make decisions when the time calls for it (66.7%),” “My physician will make decisions when the time calls for it (60.3%),” “At my present age, there is no need to consider such decisions (44.4%),” or “I have no information about ADs (30.2%).”
n (%)
Writing ADs in case of being incapable of communicating or making decisions Strongly agree 14 (9.0) Agree 78 (50.0) Disagree 64 (41.0) Strongly disagree 0 (0.0) The form of ADs preferred LW 78 (50.0) DPAHC 63 (40.4) Both 15 (9.6) Who?a (n = 78) Spouse 11 (14.1) Children 67 (85.9) Friend 1 (1.3) Lawyer 2 (2.6) Doctor 11 (14.1) Legalization of ADs Agree 56 (35.9) Disagree 19 (12.2) Not sure 81 (51.9) Obtaining information about medical status Want 96 (61.5) Do not want 60 (38.5) Note. ADs = advance directives; LW = living will; DPAHC = durable power of attorney for health care. a Only respondents who chose “DPAHC” or “Both” for the previous question were instructed to choose the person; multiple responses were allowed.
Predictors of Agreement With Writing ADs The variables that showed significant differences between groups of “agree” and “disagree” with writing ADs are presented in Table 3. These variables were entered into the multiple logistic regression models by using the backward technique to determine the factors associated with agreement with writing ADs. Five models were generated, but only one was chosen as the most stringent model. This model contained only the variables of the greatest statistical significance (p < .05). Variables that were omitted from the final model did not substantially affect the coefficients or the standard errors of the retained variables. Although a variable of “the form of ADs preferred” was included in the final model, it did not significantly predict agreement with writing ADs, irrespective of whether participants selected LW or DPAHC. Finally, it was observed that those who had thought about what life-sustaining treatments, they would want were more likely to agree with writing ADs than those who had not, odds ratio (OR) = 4.02, 95% confidence interval (CI) [1.56, 10.38]. The participants who supported the legalization of ADs were more likely to agree with writing ADs than those who answered, “I am not sure about the legalization of ADs,” OR = 4.68, 95% CI [1.69, 12.96]. Participants who wanted to know their medical status were
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Park and Song Table 3. Differences in Agreement With Writing Advance Directives by Demographic Characteristics, Knowledge, Experience, and Preferences (N = 156).
Variable
Agree
Disagree
n (%)
n (%)
Marital status Married 45 (69.2) Unmarried 47 (51.6) Education ≤Elementary school 30 (42.9) ≤Middle school 13 (68.4) ≤High school 23 (69.7) ≥College 26 (76.5) LSTs Yes 32 (76.2) No 53 (53.0) Not sure 7 (50.0) Having thought about LSTs Yes 41 (80.4) No 51 (48.6) Having thought about appointing decision makers Yes 28 (73.7) No 64 (54.2) The form of ADs preferred LW 57 (73.1) DPAHC 22 (34.9) Both 13 (86.7) Legalization of ADs Agree 49 (87.5) Disagree 9 (47.4) Not sure 34 (42.0) Obtaining information about medical status Want 70 (72.9) Do not want 22 (36.7)
χ2
p
20 (30.8) 44 (48.4)
4.85
.028
40 (57.1) 6 (31.6) 10 (30.3) 8 (23.5)
14.09
.003
10 (23.8) 47 (47.0) 7 (50.0)
7.09
.029
10 (19.6) 54 (51.4)
14.37
