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Factors influencing attitudes toward advance directives in Korean older adults
Archives of Gerontology and Geriatrics 74 (2018) 155–161
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Factors influencing attitudes toward advance directives in Korean older adults☆
MARK
Ji Eun Leea, Dong Wook Shind, Ki Young Sona, Hyun Jung Parka, Jae-Young Lime, Mi Soon Songf, ⁎ ⁎⁎ Yeon-Hwan Parkf, , BeLong Choa,b,c, a Department of Family Medicine, Center for Health Promotion and Optimal Aging, Health Promotion Center for Cancer Survivor, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 03087, Republic of Korea b Advanced Institute of Convergence Technology, Seoul National University, 145 Gwanggyo-ro, Yeongtong-gu, Suwon-si, Gyeonggi-do 16229, Republic of Korea c Institute on Aging, College of Medicine, Seoul National University, 71 Ihwajang-Gil, Jongno-gu, Seoul 03087, Republic of Korea d Department of Family Medicine, Samsung Medical Center, 81 Irwon-Ro, Gangnam-gu., Seoul 06351, Republic of Korea e Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, 82 Gumi-ro, Bundang-gu, Seongnam-si, Gyeonggi-do 13620, Republic of Korea f College of Nursing, The Research Institute of Nursing Science, Seoul National University, 103 Daehak-ro, Jongno-gu, Seoul 03080, Republic of Korea
A R T I C L E I N F O
A B S T R A C T
Keywords: Advance care planning Advance directives End-of-life Family discussion Personal experience
Aim: We aimed to determine the factors influencing attitudes toward advance directives in Korean older adults with consideration of an Asian cultural background. Methods: We recruited community-dwelling older adults aged 60 years or older at a regional senior welfare center in Korea. Demographic factors and mental and physical health status were examined using questionnaires and a physical examination. The questionnaire also assessed perceived necessity of advance directives and related experiences. Results: Most participants (79.32%) agreed that advance directives were necessary. Older adults with high education levels (odds ratio [OR] 2.31, 95% confidence interval [CI] 0.84–6.34), low economic status (OR 2.09, 95% C.I. 0.60–7.27), and poor cognitive function (adjusted odds ratio [aOR] 2.10, 95% CI 0.89–4.97) had a greater odds of agreeing that advance directives are necessary. All participants with self-care problems (9/9) and most participants with at risk status of physical functioning (13/14) reported agreement. Death-related experiences were also associated. Notably, individuals who had discussions on end-of-life care with family members showed a greater odds of agreeing that advance directives are necessary (aOR 2.12, 95% CI 0.88–5.11). Conclusions: The factors associated with increased agreement that advance directives are necessary were high education level, low economic status, poor cognitive function, problems in self-care, poor physical functioning, death-related experiences. Especially, discussions of end-of-life care with family members increased the agreement. Thus, discussion on end-of-life care should be encouraged and the factors influencing older adults’ attitudes toward advance directives should be considered in developing policies for such discussion.
1. Introduction The age at death is currently increasing, which has led to changes in the most common causes of death. Currently, chronic diseases such as cancer, stroke, and dementia are the highest ranking causes of death in most countries (Korea, 2013). These chronic diseases cause disability and long-term suffering from pain at end-of-life, thereby increasing the burden of patients and caregivers. This change has made advance care
planning (ACP) increasingly important. ACP refers to the process of formal decision making regarding future care that takes effect when patients lose the capacity to make decisions (Mullick, Martin, & Sallnow, 2013). Advance directives (ADs) are documents detailing patients’ wishes for life-sustaining treatment, their choice of a surrogate decision maker, or both (Silveira, Kim, & Langa, 2010). ADs are critical for ACP because they are considered written proof of the plan. As shown in previous studies, ADs enable people to
☆ This study protocol and interim results of this study was presented at the Korean Geriatrics Society 2015 Autumn Conference, which was held on 28th–29th Nov 2015 at Seoul, South Korea. ⁎ Corresponding author. ⁎⁎ Corresponding author at: Department of Family Medicine, Center for Health Promotion and Optimal Aging, Health Promotion Center for Cancer survivor, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 03087, Republic of Korea. E-mail addresses: [email protected] (Y.-H. Park), [email protected] (B. Cho).
http://dx.doi.org/10.1016/j.archger.2017.10.008 Received 3 June 2016; Received in revised form 25 September 2017; Accepted 11 October 2017 Available online 31 October 2017 0167-4943/ © 2017 Elsevier B.V. All rights reserved.
Archives of Gerontology and Geriatrics 74 (2018) 155–161
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analysis. Comorbidities assessed included hypertension, stroke, dyslipidemia, angina or myocardial infarction, diabetes mellitus, thyroiditis, arthritis, osteoporosis, lumbar pain, chronic bronchitis or emphysema, asthma, tuberculosis, cataract, chronic otitis media, duodenal ulcer or gastritis, hepatitis, liver cirrhosis, chronic kidney disease, benign prostate hyperplasia, urinary incontinence, sexually transmitted disease, anemia, skin disease, depression, any cancer, and any fracture or its sequelae. The comorbid diseases were grouped into none/hypertension, diabetes or dyslipidemia/stroke, angina, myocardial infarction or cancer/other diseases. For instrumental activities of daily living (IADL), obtaining a score of over 10 was regarded as being dependent. Loneliness and social support were assessed using the social domain of the Comprehensive Frailty Assessment Instrument (De Witte et al., 2013). Depressive mood was assessed by the Geriatric Depression Scale Short Form Korean version; a score of 5 or more indicated depressive symptoms (Jee & Lee, 2013; Lee, Kim, & Jung, 2009). The EQ5D, Mini-Cog test, and Mini-Nutritional Assessment Short Form Korean version were used to assess health-related quality of life, cognitive function, and nutritional status, respectively. For the 5 subscales of the EQ-5D, individuals with scores of > 1 were categorized as having problems (Cheung, Oemar, Oppe, & Rabin, 2009). Physical functioning was assessed with a short physical performance battery by trained research assistants. Participants with scores of ≥10, 7–9, ≤6 were regarded as normal, frail, and at-risk, respectively. The assessment of attitudes toward ADs and related experiences were also included in the questionnaire. Prior to the assessment, a short explanation about ADs was given as ‘the form of a document that allows the patient’s opinions to be written in advance and reflected in the treatment decision in the event the patient loses consciousness and is unable to choose treatment by himself or herself’. Then, participants were asked if they were in favor of ADs using the following question: “Do you think these documents are necessary?”. For experiences related to ADs, in order to assess the recent medical care received by the subjects, we asked whether they have had outpatient or inpatient care over the past six months. We also assessed personal experiences of discussions on end-of-life care with family members or health professionals. For death-related experiences, we asked if the participant had experienced the following events during the past five years: Hospitalization – self; hospitalization – family members; observed a family member dying; taken care of someone who was dying; experienced cardiopulmonary resuscitation; witnessed another person receiving cardiopulmonary resuscitation; and death of a family member, relative, or friend.
receive the care of their choice and can thus improve the quality of their end-of-life care (Silveira et al., 2010). Some studies have also revealed that they can reduce healthcare expenditures (Nicholas, Langa, Iwashyna, & Weir, 2011; Starr, 2008). Currently, the use of ADs varies across countries. In the US, the Patient Self-Determination Act took effect in 1990, mandating that all Medicare-certified institutions provide patients with written information regarding their right to formulate ADs. Recently, it is estimated that up to 70% of community-dwelling older adults have completed ADs (Starr, 2008). In addition, on January 1, 2016, the Centers for Medicare & Medicaid Services (CMS) began reimbursing for ACP. In contrast, in South Korea, ACP and ADs are not well known among general people. ADs are fulfilled by non-government organizations and some hospitals; however, they have no standardized format. In the past two decades, two events have sparked public interest in ACP and related end-of-life issues. First, at Boramae Hospital in 1997, physicians discontinued life-sustaining treatment and discharged a patient at his wife’s request. The physicians were found guilty even though further therapy was deemed futile. Over ten years later, in 2009, the Korean Supreme Court recognized a patient’s previously stated intention for care and permitted withdrawal of life-sustaining treatment. The two conflicting incidents generated social discourse on ACP and end-of-life issues in South Korea, and encouraged some policymakers to attempt to enact legislation. After all, a law so-called ‘well-dying act’ which recognizes the legal validity of ACP and ADs has been passed the congress, in January 2016. This law is due for implementation in 2018. However, there is still a lack of research on the perceptions and factors that affect ACP and ADs. Knowledge of such factors is needed for proper discussion of the activation of ACP. To date, most investigations on end-of-life issues have taken place in Western, Anglo-Saxon societies. Furthermore, most of the studies were descriptive and focused solely on socioeconomic factors (Randén, Helde-Frankling, Runesdotter, & Strang, 2013; Rao, Anderson, Lin, & Laux, 2014). There is a lack of research in Asian countries, particularly in South Korea. Additionally, other factors including health status, physical functioning, and personal experiences of older adults may affect their opinions about ACP and end-of-life care. Thus, the objective of this study was to determine the factors influencing attitudes toward ADs in Korean older adults so as to contribute to the activation of ACP and ADs. 2. Materials and methods 2.1. Study population and data collection procedure
2.3. Statistical analyses The present study was part of a prospective cohort study called “Health Status of Community Dwelling Older Adults: Community-Based Prospective Cohort Study” on older adults aged 60 years or older living in the region of Jongnogu in South Korea. This comprehensive study aimed to examine medical problems, socioeconomic factors, and physical functioning in community-dwelling older adults. All participants were recruited from a senior welfare center and a total of 512 older adults participated. An optional part of the questionnaire administered to participants asked them their perspectives on ADs and related personal experiences. Participants who responded to that part of the questionnaire were included in the present analysis. Ultimately, 295 (57.62%) older adults completed the questionnaire. This study was approved by the Institutional Review Board of Seoul National University Hospital.
Participants were grouped into agreement and disagreement groups according to whether they agreed or disagreed that ADs were necessary, respectively. Then, we compared the demographic characteristics, physical and mental health status, and individual experiences between the two groups; for categorical variables, this was done by chi-square tests, while for continuous variables, we used the Mann-Whitney U test. To investigate the associations between each variable and attitudes toward ADs, odds ratios (ORs), and P-values for trend were calculated using univariate and multivariate logistic regression analysis. P-values of < 0.10 were considered statistically significant. STATA (ver. 14.0; STATA Corp., Houston, TX, USA) was used for all statistical analyses. 3. Results
2.2. Measures
3.1. Study population characteristics
The questionnaire comprised items assessing physical and mental health status and health-related quality of life. Self-rated health was assessed using response choices of “very healthy,” “ordinary,” and “not healthy,” which were relabeled “good,” “fair,” and “poor” for the
A total of 295 participants were included in the analysis. Their mean age was 73.55 years old and they were primarily women (71.53%). About half (49.83%) had not been educated past middle school. For self-reported economic status, only 4.75% considered themselves as 156
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3.4. Association between ADs attitudes and personal experiences
Table 1 General characteristics. Total (N = 295) n
All participants who had visited the emergency room within the previous 6 months (n = 14) were in the agreement group. Furthermore, all participants who had experienced CPR (n = 5) and most of those who had witnessed it (n = 20/22) within the previous 5 years were in the agreement group. Those who had discussed end-of-life care (i.e., ACP) with family members had a greater odds of being in the agreement group compared to those who had not discussed it (OR 2.15, 95% CI 0.92–5.01). This tendency remained after adjusting for possible confounders (age, gender, education level, economic status, marriage, selfrated health, comorbidities, and depression; adjusted OR 2.12, 95% CI 0.88–5.11). However, only 58 of the 295 participants had had such a discussion. Only 24 participants had experienced a discussion on endof-life care with health professionals; among them, most (n = 20) were in the agreement group (Table 4).
%
Age, mean (SD)
73.55 (6.23)
Gender Male Female
84 211
28.47 71.53
Education level Less than middle school Less than high school Less than college College and above
147 46 60 42
49.83 15.59 20.34 14.24
Economic status (self-reported) High Middle Low
14 144 137
4.75 48.81 46.44
Marriage Unmarrieda Married
153 142
51.86 48.14
Religion Do not have Have
70 225
23.73 76.27
4. Discussion A major strength of this study is its comprehensive investigation of the associations of attitudes toward ADs with socioeconomic factors, physical and mental health status, physical functioning, and personal experiences. To date, most studies on this topic were descriptive and focused on socioeconomic and cultural factors (Randén et al., 2013; Rao et al., 2014). For older adults, other factors such as health status, physical functioning, and self-care ability may have considerable effects on their attitudes towards end-of-life issues. Until now, in South Korea, ACP and ADs have not been well known among the general population (Yu, Chae, Choi, & Kim, 2013), especially among older adults. In the current study, only 29.15% had heard of a “proxy-designation,” and none had reported completing an AD (not shown in tables). However, most respondents agreed that ADs were necessary (n = 234, 79.32%) after receiving a short explanation about them; thus, providing exposure to ACP and ADs via education (e.g., media campaigns) would likely help increase positive attitudes toward ACP. Indeed, exposure to educational media initiatives has been found to contribute to increased completion of ADs (Alano et al., 2010). Participants with low economic status were more likely to be in the agreement group. In previous studies, many elderly patients expressed anxiety about the future and expected ACP to determine their future care (Davison & Simpson, 2006; Kass-Bartelmes & Hughes, 2004; Seymour, Gott, Bellamy, Ahmedzai, & Clark, 2004). Thus, it is possible that participants who considered themselves to have low economic status feel more anxious about the future and desire ACP to relieve that anxiety. Similarly, all participants who had visited the emergency room within 6 months and most respondents who had experienced or witnessed CPR expressed agreement that ADs were necessary. These experiences would likely aggravate older adults’ anxiety about the future. Although directly asking about depressive mood or anxiety did not reveal any relation between anxiety/depression and AD attitudes, nonclinical anxiety about the future might still affect older adults’ perception of ADs. From the health-related quality of life assessment, all participants who had problems with self-care were in the agreement group, as were most participants categorized as “at-risk” in terms of physical function. The observed relations between poor self-care and physical functioning and AD agreement can be explained by perception of burden, especially in the context of an Asian cultural background. Having a poor physical condition make older adults’ more dependent, thereby increasing the burden on family caregivers as well as self-perceived burden, which refers to care recipients’ feelings of dependence and the resulting frustration (Chan, 2007). Older adults in many cultures profess not wanting to burden their family members (McPherson, Wilson, & Murray, 2007). Furthermore, previous surveys of older adults’ perspectives on ACP have shown that older adults believed that ACP would help relieve family burden (McPherson et al., 2007). In the
a Unmarried participants included those who were divorced, widowed, and never married.
being “high”. Furthermore, 48.14% were married, while the rest were divorced, widowed, or never married (Table 1). 3.2. Association between ADs attitudes and demographic factors The distributions of age and gender did not significantly differ between the agreement and disagreement groups. The agreement group had more highly educated participants than that of disagreement group ([college and above] 15.81% vs. 8.20%). Furthermore, highly educated participants had a greater odds of being in the agreement group (OR 2.31, 95% confidence interval [CI] 0.84–6.34) than did less educated participants. Regarding economic status, in the agreement group, more participants had a low economic status than in the disagreement group (49.15% vs. 36.07%). Participants with low economic status had a greater odds of being in the agreement group (OR 2.09, 95% CI 0.60–7.27). Finally, married participants had a greater odds of being in the agreement group than did unmarried participants (OR 1.71, 95% CI 0.96–3.05) (Table 2). 3.3. Association between ADs attitudes and physical and mental health status Nine participants, all of whom were in the agreement group, reported problems with self-care. Regarding comorbidities, participants with “other diseases” had a greater odds of being in the agreement group compared with participants without comorbidities (aOR 3.62, 95% CI 1.11–11.82). This category includes diseases other than metabolic diseases or cancers. In terms of nutritional status, 10 persons were categorized as malnourished and all of them were in the agreement group. Participants who showed poor cognitive function had a greater odds of being in the agreement group (aOR 2.10, 95% CI 0.89–4.97) then participants with normal cognitive function after adjustment for age, gender, education level, economic status, marital status, religious status. In terms of physical performance, 14 subjects were categorized as at-risk, most of whom (n = 13) were in the agreement group. Other factors, such as self-rated health, fall experience, IADL score, social support and depression were not significantly different between the two groups. Furthermore, none of these factors affected the odds of being in the agreement group (Table 3). 157
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Table 2 Comparison of demographic characteristics by attitudes toward advance directives. Attitudes toward advance directives Disagreement (n = 61) n
Agreement (n = 234) %
n
%
OR (95% CI)c
P for trend
0.155
0.98 (0.94–1.03)
0.426
Age, mean (SD)
74.11 (5.06)
Gender Male Female
13 48
21.31 78.69
71 163
30.34 69.66
0.164
1.00 0.62 (0.32–1.22)
0.167
Education level Less than middle school Less than high school Less than college College and above
35 12 9 5
57.38 19.67 14.75 8.20
112 34 51 37
47.86b 14.53 21.79 15.81
0.183
1.00 0.89 (0.41–1.89) 1.77 (0.79–3.96) 2.31 (0.84–6.34)
0.052
Economic status (self-reported) High Middle Low
4 35 22
6.56b 57.38 36.07
10 109 115
4.27 46.58 49.15
0.176
1.00 1.25 (0.37–4.22) 2.09 (0.60–7.27)
0.068
Marriage Unmarrieda Married
38 23
62.30 37.70
115 119
49.15 50.85
0.067
1.00 1.71 (0.96–3.05)
0.069
Religion Do not have Have
16 45
26.23 73.77
54 180
23.08 76.92
0.606
1.00 1.19 (0.62–2.26)
0.606
a b c
73.40 (6.50)
P-value
Unmarried participants included those who were divorced, widowed, and never married. Total percentages may not equal 100% because of rounding off. OR = odds ratio, CI = confidence interval.
To encourage end-of-life discussions, educational materials or media campaigns might be helpful (Alano et al., 2010; High, 1993). However, in some studies, using written materials without direct counseling was relatively ineffective for increasing AD completion (Ramsaroop, Reid, & Adelman, 2007). Indeed, provision of oral information over multiple sessions was found to be the most successful intervention (Bravo, Dubois, & Wagneur, 2008). Thus, face-to-face discussion should be encouraged. To support such discussion, specific education for family members and health professionals might be needed. On the other hand, to ensure active end-of-life discussion, the development of policies supporting it would be required. Additionally, reimbursement for ACP consultation would be helpful. Recently in South Korea, a law recognizing the validity of ACP and ADs has been legislated, however, sufficient discussion is required before acting the law. In such discussions, it should be considered that older adults’ education level, economic status, physical functioning, and self-perceived burden can affect their perspectives on ACP. In other words, efforts enabling older adults to frankly express their hopes for ADs and end-of-life care, not based on such conditions, are needed. This study had some limitations. First, there were inequalities in general characteristics of the subjects included in the agreement and disagreement groups, such as educational level, economic level, marital status, and religion. These differences may have affected the relationship between other factors and attitudes toward ADs. On the other hand, however, differences in the characteristics may also be considered as important factors affecting the attitudes toward ADs. Second, although the question of necessity of ADs was most important, it was evaluated with only one question. ADs may include diverse options and the format can be varied. In future studies, it is expected that attitudes toward such varied options of ADs could be studied using more detail questions on ADs. Third, participants were recruited from one region of South Korea, so the results may not be generalizable. Korean culture and the economic status of the region might have affected the results. Fourth, participants were recruited from a senior welfare center, so their physical function might be better than that of other older adults.
Confucian cultures of Eastern Asia, burdening others is considered highly discourteous. This is called meiwaku in Japan, which means causing trouble to others, and should be avoided (Bito et al., 2007). A study on end-stage cancer patients and their family caregivers in South Korea showed that patients who perceived themselves as burdens to their families were more likely to prefer palliative care over life-sustaining treatment (Lee et al., 2015). Therefore, in end-of-life decisionmaking, burden on family seems to be very important factor for older adults. The high agreement on ADs among respondents with poor physical functioning and problem in self-care could be understood in this context. Both in this study and in previous studies (Alano et al., 2010), more married people agreed on ADs than did unmarried people. Again, not wanting to burden spouses could explain the result. In addition, as in other studies, patients appear to consider ACP as means of avoiding placing undue responsibility for end-of-life decision-making on loved ones (Alano et al., 2010; Chan, 2007). This study revealed that discussion of end-of-life issues with family members would help older adults agree on ADs. The older adults who had discussed their end-of-life care with family members had a greater odds of being in the agreement group compared to participants who had not had such a discussion. A similar trend, albeit not as strong, was observed for discussion with health professionals. Thus, discussions with older adults on end-of-life care may improve their attitudes toward ADs. This accords somewhat with an earlier intervention study on community-dwelling older adults, wherein provision of educational material increased use of ADs, and the increase was greater when education was provided in a face-to-face meeting (High, 1993). However, in the present study, very few participants had experienced a discussion on end-of-life care with family members or health professionals. In South Korea, conversations about death can be considered an assault on a person’s wellbeing (Blank, 2011). Thus, caregivers and health professionals may feel it to be disrespectful to discuss end-of-life care. However, as shown in this study, many older adults have positive attitudes towards ADs. Thus, ACP should be supported so that older adults can openly express their hopes about end-of-life care. 158
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Table 3 Comparison of physical and mental health status by attitudes toward advance directives. Attitudes toward advance directives
Health-related quality of lifea Mobility No problems Problems Self-care No problems Problems Usual activity No problems Problems Pain/discomfort No problems Problems Depression/anxiety No problems Problems Self-rated health Good Fair Poor Comorbidities None Hypertension, diabetes, or dyslipidemiab Stroke, angina or cancer Other diseases IADLc Independent Dependent Social supportd Loneliness, mean (SD) Social network, mean (SD) Depressive moode Not depressive Depressive Cognitive functionf,i Normal Poor Nutritiong,i Normal Risk of malnutrition Malnutrition Physical performanceh Normal Frail At-risk Fall in previous 6 months No Yes
Disagreement (n = 61)
Agreement (n = 234)
n
n
%
P-value
OR (95% CI)l
aOR (95% CI)m
%
48 13
78.69 21.31
198 36
84.62 15.38
0.268
1.00 0.67 (0.33–1.36)
1.00 0.72 (0.34–1.50)
61 0
100.00 0.00
225 9
96.15 3.85
0.120
1.00 N/Aj
1.00 N/Aj
55 6
90.16 9.84
218 16
93.16 6.84
0.427
1.00 0.67 (0.25–1.80)
1.00 0.76 (0.27–2.11)
32 29
52.46 47.54
122 112
52.14 47.86
0.964
1.00 1.01 (0.58–1.78)
1.00 1.01 (0.55–1.84)
48 13
78.69 21.31
175 59
74.79 25.21
0.527
1.00 1.24 (0.63–2.46)
1.00 1.14 (0.56–2.33)
18 24 19
29.51 39.34 31.15
81 95 58
34.62k 40.60 24.79
0.564
1.00 0.88 (0.45–1.73) 0.68 (0.33–1.40)
1.00 0.70 (0.34–1.44) 0.57 (0.26–1.24)
12 36 8 5
19.67 59.02 13.11 8.20
30 138 25 41
12.82k 58.97 10.68 17.52
0.208
1.00 1.53 (0.71–3.29) 1.25 (0.44–3.54) 3.28 (1.04–10.30)
1.00 1.61 (0.73–3.54) 1.16 (0.39–3.48) 3.62 (1.11–11.82)
50 11
81.97 18.03
203 31
86.75 13.25
0.341
1.00 0.69 (0.33–1.48)
1.00 0.58 (0.26–1.28)
0.329 0.309
0.96 (0.87–1.05) 0.90 (0.74–1.10)
0.96 (0.87–1.05) 0.89 (0.73–1.10)
10.69 (3.39) 1.82 (1.64)
10.24 (3.18) 1.62 (1.25)
34 27
55.74 44.26
138 96
58.97 41.03
0.648
1.00 0.88 (0.50–1.55)
1.00 0.77 (0.42–1.43)
52 8
86.67 13.33
188 46
80.34 19.66
0.259
1.00 1.59 (0.71–3.58)
1.00 2.10 (0.89–4.97)*
47 14 0
77.05 22.95 0.00
179 44 10
76.82k 18.88 4.29
0.221
1.00 0.83 (0.42–1.63) N/Aj
1.00 0.91 (0.44–1.85) N/Aj
47 13 1
77.05 21.31 1.64
190 31 13
81.20k 13.25 5.56
0.151
1.00 0.59 (0.29–1.21) 3.22 (0.41–25.20)
1.00 0.68 (0.31–1.50) 4.09 (0.50–33.29)
48 13
78.69 21.31
198 36
84.62 15.38
0.268
1.00 0.67 (0.33–1.36)
1.00 0.60 (0.28–1.27)
n
Health-related quality of life was assessed by the 5 subscales of the EQ-5D questionnaire; scores of greater than 1 were categorized as “problems”. Participants with stroke, angina, myocardial infarction, or cancer were excluded. c IADL = instrumental activities of daily living; scores of > 10 indicated dependency. d Social support was measured by the social domain of the Comprehensive Frailty Assessment Instrument; higher scores indicate greater social support. e Depressive symptoms were measured by the Geriatric Depression Scale Short Form Korea Version; participants with a score of 5 or more were considered as having depressive symptoms. f Cognitive function was measured by Mini-Cog test. g Nutritional status was measured by using the Mini-Nutritional Assessment Short Form Korea version. h Physical performance was assessed by a short physical performance battery. i There was one missing response in each of cognitive function and nutrition assessment. j Calculation of odds ratios was not possible because some categories did not contain a value. k Total percentages may not equal 100% because of rounding off. l OR = odds ratio, CI = confidence interval. m aOR = adjusted odds ratio; these ORs were adjusted for age, gender, education level, economic status, marital status, religious status. n For odds ratios with asterisk (*), p-values were < 0.10. a
b
Lastly, the part of the questionnaire asking about end-of-life care and ADs was optional, so only participants who agreed to respond to that part were included in the analysis. Such patients may have had more positive attitudes toward end-of-life issues, which in turn might have
In fact, the prevalence of dependency according to an IADL assessment was much lower among the present participants than among the general population (Jung, Kim, Choi, Lee, & Park, 2009). Thus, participants’ responses might have been affected by their physical condition. 159
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Table 4 Comparison of personal experiences by attitudes toward advance directives. Attitudes toward advance directives
Hospital service use for last 6 months Outpatient visit No Yes Emergency room visit No Yes Death-related experiencesa Hospital admission No Yes Hospital admission of family member members No Yes Caregiving of patient at EOLa,c No Yes Experienced CPRb No Yes Witnessed CPRb No Yes Witnessed death of an acquaintance No Yes Experienced discussion With family members No Yes With health professionals No Yes
Disagreement (n = 61)
Agreement (n = 234)
n
n
%
P-value
OR (95% CI)d
aOR (95% CI)e
%
8 53
13.11 86.89
36 198
15.38 84.62
0.658
1.00 0.83 (0.36–1.89)
1.00 0.84 (0.36–1.98)
61 0
100.00 0.00
220 14
94.02 5.98
0.050
1.00 N/Af
1.00 N/Af
23 23
50.00 50.00
98 63
60.87 39.13
0.187
1.00 0.64 (0.33–1.24)
1.00 0.65 (0.32–1.33)
30 16
65.22 34.78
99 64
60.74 39.26
0.581
1.00 1.21 (0.61–2.40)
1.00 1.21 (0.59–2.49)
33 13
71.74 28.26
118 45
72.39 27.61
0.930
1.00 0.97 (0.47–2.00)
1.00 0.94 (0.43–2.05)
46 0
100.00 0.00
158 5
96.93 3.07
0.229
1.00 N/Af
1.00 N/Af
44 2
95.65 4.35
143 20
87.73 12.27
0.122
1.00 3.08 (0.69–13.68)
1.00 4.22 (0.89–20.13)*g
27 19
58.70 41.30
103 60
63.19 36.81
0.579
1.00 0.83 (0.42–1.61)
1.00 0.71 (0.35–1.43)
54 7
88.52 11.48
183 51
78.21 21.79
0.071
1.00 2.15 (0.92–5.01)*
1.00 2.12 (0.88–5.11)*
57 4
93.44 6.56
214 20
91.45 8.55
0.613
1.00 1.33 (0.44–4.05)
1.00 1.13 (0.35–3.62)
a Experience was within the previous 5 years. There were 88 missing responses for experience of hospital admission and 86 missing. responses for the other questions on death-related experience. b CPR = cardiopulmonary resuscitation. c EOL = end-of-life. d OR = odds ratio, CI = confidence interval. e aOR = adjusted odds ratio; these ORs were adjusted for age, gender, education level, economic status, marital status, self-rated health, comorbidities, and depression. f Calculations of odds ratios were not possible because some categories did not contain values. g For odds ratios with asterisk (*), p-values were < 0.10.
University as part of a joint research project of the College of Medicine and College of Nursing [grant number 800-20150098]. And we appreciate the advice and assistance of The Korean Geriatrics Society.
introduced bias into the results. 5. Conclusion
References
In conclusion, many community-dwelling older adults in South Korea agreed that ADs were necessary. The factors associated with agreement were high education level, low economic status, being married, poor cognitive function, having problems in self-care, having poor physical functioning, having experiences of emergency room visits and CPR, and having had discussions about end-of-life care with family members. Thus, end-of-life discussion should be encouraged and educational programs and policies for it should be prepared. The abovementioned factors affecting the older adults’ attitudes should be considered in developing such programs and policies.
Alano, G. J., Pekmezaris, R., Tai, J. Y., Hussain, M. J., Jeune, J., Louis, B., ... Lesser, M. (2010). Factors influencing older adults to complete advance directives. Palliative & Supportive Care, 8(3), 267–275. Bito, S., Matsumura, S., Singer, M. K., Meredith, L. S., Fukuhara, S., & Wenger, N. S. (2007). Acculturation and end-of-life decision making: Comparison of Japanese and Japanese-American focus groups. Bioethics, 21(5), 251–262. Blank, R. H. (2011). End-of-life decision making across cultures. Los Angeles CA: SAGE Publications Sage CA. Bravo, G., Dubois, M.-F., & Wagneur, B. (2008). Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Social Science & Medicine, 67(7), 1122–1132. Chan, M. (2007). Self-perceived burden in palliative care. Palliative Medicine, 3, 22. Cheung, K., Oemar, M., Oppe, M., & Rabin, R. (2009). EQ-5D user guide: Basic information on how to use EQ-5D. Rotterdam: EuroQol Group. Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ, 333(7574), 886. De Witte, N., Gobbens, R., De Donder, L., Dury, S., Buffel, T., Verte, D., & Schols, J. (2013). Validation of the comprehensive frailty assessment instrument against the tilburg frailty indicator. European Geriatric Medicine, 4(4), 248–254. High, D. M. (1993). Advance directives and the elderly: A study of intervention strategies to increase use. The Gerontologist, 33(3), 342–349.
Disclosure statement No potential conflicts of interest were disclosed. Acknowledgments This study was supported by the College of Medicine, Seoul National 160
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Ramsaroop, S. D., Reid, M., & Adelman, R. D. (2007). Completing an advance directive in the primary care setting: What do we need for success? Journal of the American Geriatrics Society, 55(2), 277–283. Randén, M., Helde-Frankling, M., Runesdotter, S., & Strang, P. (2013). Treatment decisions and discontinuation of palliative chemotherapy near the end-of-life, in relation to socioeconomic variables. Acta Oncologica, 52(6), 1062–1066. 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. Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H., & Clark, D. (2004). Planning for the end of life: The views of older people about advance care statements. Social Science & Medicine, 59(1), 57–68. 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. Starr, J. (2008). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 56(1) 168–168. Yu, S. J., Chae, Y. R., Choi, Y. S., & Kim, H. S. (2013). Patients’ perceptions of advance directives and preferences for medical care near the end of life in South Korea. Journal of Hospice & Palliative Nursing, 15(4), 233–243.
Jee, Y. J., & Lee, Y. B. (2013). Factors influencing depression among elderly patients in geriatric hospitals. Journal of Physical Therapy Science, 25(11), 1445–1449. Jung, J.-Y., Kim, J.-S., Choi, H.-J., Lee, K.-Y., & Park, T.-J. (2009). Factors associated with ADL and IADL from the third Korea national health and nutrition examination survey (KNHANES III), 2005. Korean Journal of Family Medicine, 30(8), 598–6009. Kass-Bartelmes, B. L., & Hughes, R. (2004). Advance care planning: Preferences for care at the end of life. Journal of Pain & Palliative Care Pharmacotherapy, 18(1), 87–109. Korea, S. (2013). Cause of death statistics 2012. Daejeon: Statisrics Korea. Lee, H. S., Kim, H. S., & Jung, Y. M. (2009). Depression and quality of life in Korean elders. Journal of Korean Academy of Community Health Nursing, 20(1), 12–22. Lee, J. E., Shin, D. W., Cho, J., Yang, H. K., Kim, S. Y., Yoo, H. S., & Park, K. (2015). Caregiver burden, patients’ self-perceived burden, and preference for palliative care among cancer patients and caregivers. Psycho-Oncology, 24(11), 1545–1551. McPherson, C. J., Wilson, K. G., & Murray, M. A. (2007). Feeling like a burden to others: A systematic review focusing on the end of life. Palliative Medicine, 21(2), 115–128. Mullick, A., Martin, J., & Sallnow, L. (2013). Advance care planning. BMJ, 347(7930), 28–32. Nicholas, L. H., Langa, K. M., Iwashyna, T. J., & Weir, D. R. (2011). Regional variation in the association between advance directives and end-of-life Medicare expenditures. JAMA, 306(13), 1447–1453.
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Factors influencing attitudes toward advance directives in Korean older adults☆
MARK
Ji Eun Leea, Dong Wook Shind, Ki Young Sona, Hyun Jung Parka, Jae-Young Lime, Mi Soon Songf, ⁎ ⁎⁎ Yeon-Hwan Parkf, , BeLong Choa,b,c, a Department of Family Medicine, Center for Health Promotion and Optimal Aging, Health Promotion Center for Cancer Survivor, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 03087, Republic of Korea b Advanced Institute of Convergence Technology, Seoul National University, 145 Gwanggyo-ro, Yeongtong-gu, Suwon-si, Gyeonggi-do 16229, Republic of Korea c Institute on Aging, College of Medicine, Seoul National University, 71 Ihwajang-Gil, Jongno-gu, Seoul 03087, Republic of Korea d Department of Family Medicine, Samsung Medical Center, 81 Irwon-Ro, Gangnam-gu., Seoul 06351, Republic of Korea e Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, 82 Gumi-ro, Bundang-gu, Seongnam-si, Gyeonggi-do 13620, Republic of Korea f College of Nursing, The Research Institute of Nursing Science, Seoul National University, 103 Daehak-ro, Jongno-gu, Seoul 03080, Republic of Korea
A R T I C L E I N F O
A B S T R A C T
Keywords: Advance care planning Advance directives End-of-life Family discussion Personal experience
Aim: We aimed to determine the factors influencing attitudes toward advance directives in Korean older adults with consideration of an Asian cultural background. Methods: We recruited community-dwelling older adults aged 60 years or older at a regional senior welfare center in Korea. Demographic factors and mental and physical health status were examined using questionnaires and a physical examination. The questionnaire also assessed perceived necessity of advance directives and related experiences. Results: Most participants (79.32%) agreed that advance directives were necessary. Older adults with high education levels (odds ratio [OR] 2.31, 95% confidence interval [CI] 0.84–6.34), low economic status (OR 2.09, 95% C.I. 0.60–7.27), and poor cognitive function (adjusted odds ratio [aOR] 2.10, 95% CI 0.89–4.97) had a greater odds of agreeing that advance directives are necessary. All participants with self-care problems (9/9) and most participants with at risk status of physical functioning (13/14) reported agreement. Death-related experiences were also associated. Notably, individuals who had discussions on end-of-life care with family members showed a greater odds of agreeing that advance directives are necessary (aOR 2.12, 95% CI 0.88–5.11). Conclusions: The factors associated with increased agreement that advance directives are necessary were high education level, low economic status, poor cognitive function, problems in self-care, poor physical functioning, death-related experiences. Especially, discussions of end-of-life care with family members increased the agreement. Thus, discussion on end-of-life care should be encouraged and the factors influencing older adults’ attitudes toward advance directives should be considered in developing policies for such discussion.
1. Introduction The age at death is currently increasing, which has led to changes in the most common causes of death. Currently, chronic diseases such as cancer, stroke, and dementia are the highest ranking causes of death in most countries (Korea, 2013). These chronic diseases cause disability and long-term suffering from pain at end-of-life, thereby increasing the burden of patients and caregivers. This change has made advance care
planning (ACP) increasingly important. ACP refers to the process of formal decision making regarding future care that takes effect when patients lose the capacity to make decisions (Mullick, Martin, & Sallnow, 2013). Advance directives (ADs) are documents detailing patients’ wishes for life-sustaining treatment, their choice of a surrogate decision maker, or both (Silveira, Kim, & Langa, 2010). ADs are critical for ACP because they are considered written proof of the plan. As shown in previous studies, ADs enable people to
☆ This study protocol and interim results of this study was presented at the Korean Geriatrics Society 2015 Autumn Conference, which was held on 28th–29th Nov 2015 at Seoul, South Korea. ⁎ Corresponding author. ⁎⁎ Corresponding author at: Department of Family Medicine, Center for Health Promotion and Optimal Aging, Health Promotion Center for Cancer survivor, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 03087, Republic of Korea. E-mail addresses: [email protected] (Y.-H. Park), [email protected] (B. Cho).
http://dx.doi.org/10.1016/j.archger.2017.10.008 Received 3 June 2016; Received in revised form 25 September 2017; Accepted 11 October 2017 Available online 31 October 2017 0167-4943/ © 2017 Elsevier B.V. All rights reserved.
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analysis. Comorbidities assessed included hypertension, stroke, dyslipidemia, angina or myocardial infarction, diabetes mellitus, thyroiditis, arthritis, osteoporosis, lumbar pain, chronic bronchitis or emphysema, asthma, tuberculosis, cataract, chronic otitis media, duodenal ulcer or gastritis, hepatitis, liver cirrhosis, chronic kidney disease, benign prostate hyperplasia, urinary incontinence, sexually transmitted disease, anemia, skin disease, depression, any cancer, and any fracture or its sequelae. The comorbid diseases were grouped into none/hypertension, diabetes or dyslipidemia/stroke, angina, myocardial infarction or cancer/other diseases. For instrumental activities of daily living (IADL), obtaining a score of over 10 was regarded as being dependent. Loneliness and social support were assessed using the social domain of the Comprehensive Frailty Assessment Instrument (De Witte et al., 2013). Depressive mood was assessed by the Geriatric Depression Scale Short Form Korean version; a score of 5 or more indicated depressive symptoms (Jee & Lee, 2013; Lee, Kim, & Jung, 2009). The EQ5D, Mini-Cog test, and Mini-Nutritional Assessment Short Form Korean version were used to assess health-related quality of life, cognitive function, and nutritional status, respectively. For the 5 subscales of the EQ-5D, individuals with scores of > 1 were categorized as having problems (Cheung, Oemar, Oppe, & Rabin, 2009). Physical functioning was assessed with a short physical performance battery by trained research assistants. Participants with scores of ≥10, 7–9, ≤6 were regarded as normal, frail, and at-risk, respectively. The assessment of attitudes toward ADs and related experiences were also included in the questionnaire. Prior to the assessment, a short explanation about ADs was given as ‘the form of a document that allows the patient’s opinions to be written in advance and reflected in the treatment decision in the event the patient loses consciousness and is unable to choose treatment by himself or herself’. Then, participants were asked if they were in favor of ADs using the following question: “Do you think these documents are necessary?”. For experiences related to ADs, in order to assess the recent medical care received by the subjects, we asked whether they have had outpatient or inpatient care over the past six months. We also assessed personal experiences of discussions on end-of-life care with family members or health professionals. For death-related experiences, we asked if the participant had experienced the following events during the past five years: Hospitalization – self; hospitalization – family members; observed a family member dying; taken care of someone who was dying; experienced cardiopulmonary resuscitation; witnessed another person receiving cardiopulmonary resuscitation; and death of a family member, relative, or friend.
receive the care of their choice and can thus improve the quality of their end-of-life care (Silveira et al., 2010). Some studies have also revealed that they can reduce healthcare expenditures (Nicholas, Langa, Iwashyna, & Weir, 2011; Starr, 2008). Currently, the use of ADs varies across countries. In the US, the Patient Self-Determination Act took effect in 1990, mandating that all Medicare-certified institutions provide patients with written information regarding their right to formulate ADs. Recently, it is estimated that up to 70% of community-dwelling older adults have completed ADs (Starr, 2008). In addition, on January 1, 2016, the Centers for Medicare & Medicaid Services (CMS) began reimbursing for ACP. In contrast, in South Korea, ACP and ADs are not well known among general people. ADs are fulfilled by non-government organizations and some hospitals; however, they have no standardized format. In the past two decades, two events have sparked public interest in ACP and related end-of-life issues. First, at Boramae Hospital in 1997, physicians discontinued life-sustaining treatment and discharged a patient at his wife’s request. The physicians were found guilty even though further therapy was deemed futile. Over ten years later, in 2009, the Korean Supreme Court recognized a patient’s previously stated intention for care and permitted withdrawal of life-sustaining treatment. The two conflicting incidents generated social discourse on ACP and end-of-life issues in South Korea, and encouraged some policymakers to attempt to enact legislation. After all, a law so-called ‘well-dying act’ which recognizes the legal validity of ACP and ADs has been passed the congress, in January 2016. This law is due for implementation in 2018. However, there is still a lack of research on the perceptions and factors that affect ACP and ADs. Knowledge of such factors is needed for proper discussion of the activation of ACP. To date, most investigations on end-of-life issues have taken place in Western, Anglo-Saxon societies. Furthermore, most of the studies were descriptive and focused solely on socioeconomic factors (Randén, Helde-Frankling, Runesdotter, & Strang, 2013; Rao, Anderson, Lin, & Laux, 2014). There is a lack of research in Asian countries, particularly in South Korea. Additionally, other factors including health status, physical functioning, and personal experiences of older adults may affect their opinions about ACP and end-of-life care. Thus, the objective of this study was to determine the factors influencing attitudes toward ADs in Korean older adults so as to contribute to the activation of ACP and ADs. 2. Materials and methods 2.1. Study population and data collection procedure
2.3. Statistical analyses The present study was part of a prospective cohort study called “Health Status of Community Dwelling Older Adults: Community-Based Prospective Cohort Study” on older adults aged 60 years or older living in the region of Jongnogu in South Korea. This comprehensive study aimed to examine medical problems, socioeconomic factors, and physical functioning in community-dwelling older adults. All participants were recruited from a senior welfare center and a total of 512 older adults participated. An optional part of the questionnaire administered to participants asked them their perspectives on ADs and related personal experiences. Participants who responded to that part of the questionnaire were included in the present analysis. Ultimately, 295 (57.62%) older adults completed the questionnaire. This study was approved by the Institutional Review Board of Seoul National University Hospital.
Participants were grouped into agreement and disagreement groups according to whether they agreed or disagreed that ADs were necessary, respectively. Then, we compared the demographic characteristics, physical and mental health status, and individual experiences between the two groups; for categorical variables, this was done by chi-square tests, while for continuous variables, we used the Mann-Whitney U test. To investigate the associations between each variable and attitudes toward ADs, odds ratios (ORs), and P-values for trend were calculated using univariate and multivariate logistic regression analysis. P-values of < 0.10 were considered statistically significant. STATA (ver. 14.0; STATA Corp., Houston, TX, USA) was used for all statistical analyses. 3. Results
2.2. Measures
3.1. Study population characteristics
The questionnaire comprised items assessing physical and mental health status and health-related quality of life. Self-rated health was assessed using response choices of “very healthy,” “ordinary,” and “not healthy,” which were relabeled “good,” “fair,” and “poor” for the
A total of 295 participants were included in the analysis. Their mean age was 73.55 years old and they were primarily women (71.53%). About half (49.83%) had not been educated past middle school. For self-reported economic status, only 4.75% considered themselves as 156
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3.4. Association between ADs attitudes and personal experiences
Table 1 General characteristics. Total (N = 295) n
All participants who had visited the emergency room within the previous 6 months (n = 14) were in the agreement group. Furthermore, all participants who had experienced CPR (n = 5) and most of those who had witnessed it (n = 20/22) within the previous 5 years were in the agreement group. Those who had discussed end-of-life care (i.e., ACP) with family members had a greater odds of being in the agreement group compared to those who had not discussed it (OR 2.15, 95% CI 0.92–5.01). This tendency remained after adjusting for possible confounders (age, gender, education level, economic status, marriage, selfrated health, comorbidities, and depression; adjusted OR 2.12, 95% CI 0.88–5.11). However, only 58 of the 295 participants had had such a discussion. Only 24 participants had experienced a discussion on endof-life care with health professionals; among them, most (n = 20) were in the agreement group (Table 4).
%
Age, mean (SD)
73.55 (6.23)
Gender Male Female
84 211
28.47 71.53
Education level Less than middle school Less than high school Less than college College and above
147 46 60 42
49.83 15.59 20.34 14.24
Economic status (self-reported) High Middle Low
14 144 137
4.75 48.81 46.44
Marriage Unmarrieda Married
153 142
51.86 48.14
Religion Do not have Have
70 225
23.73 76.27
4. Discussion A major strength of this study is its comprehensive investigation of the associations of attitudes toward ADs with socioeconomic factors, physical and mental health status, physical functioning, and personal experiences. To date, most studies on this topic were descriptive and focused on socioeconomic and cultural factors (Randén et al., 2013; Rao et al., 2014). For older adults, other factors such as health status, physical functioning, and self-care ability may have considerable effects on their attitudes towards end-of-life issues. Until now, in South Korea, ACP and ADs have not been well known among the general population (Yu, Chae, Choi, & Kim, 2013), especially among older adults. In the current study, only 29.15% had heard of a “proxy-designation,” and none had reported completing an AD (not shown in tables). However, most respondents agreed that ADs were necessary (n = 234, 79.32%) after receiving a short explanation about them; thus, providing exposure to ACP and ADs via education (e.g., media campaigns) would likely help increase positive attitudes toward ACP. Indeed, exposure to educational media initiatives has been found to contribute to increased completion of ADs (Alano et al., 2010). Participants with low economic status were more likely to be in the agreement group. In previous studies, many elderly patients expressed anxiety about the future and expected ACP to determine their future care (Davison & Simpson, 2006; Kass-Bartelmes & Hughes, 2004; Seymour, Gott, Bellamy, Ahmedzai, & Clark, 2004). Thus, it is possible that participants who considered themselves to have low economic status feel more anxious about the future and desire ACP to relieve that anxiety. Similarly, all participants who had visited the emergency room within 6 months and most respondents who had experienced or witnessed CPR expressed agreement that ADs were necessary. These experiences would likely aggravate older adults’ anxiety about the future. Although directly asking about depressive mood or anxiety did not reveal any relation between anxiety/depression and AD attitudes, nonclinical anxiety about the future might still affect older adults’ perception of ADs. From the health-related quality of life assessment, all participants who had problems with self-care were in the agreement group, as were most participants categorized as “at-risk” in terms of physical function. The observed relations between poor self-care and physical functioning and AD agreement can be explained by perception of burden, especially in the context of an Asian cultural background. Having a poor physical condition make older adults’ more dependent, thereby increasing the burden on family caregivers as well as self-perceived burden, which refers to care recipients’ feelings of dependence and the resulting frustration (Chan, 2007). Older adults in many cultures profess not wanting to burden their family members (McPherson, Wilson, & Murray, 2007). Furthermore, previous surveys of older adults’ perspectives on ACP have shown that older adults believed that ACP would help relieve family burden (McPherson et al., 2007). In the
a Unmarried participants included those who were divorced, widowed, and never married.
being “high”. Furthermore, 48.14% were married, while the rest were divorced, widowed, or never married (Table 1). 3.2. Association between ADs attitudes and demographic factors The distributions of age and gender did not significantly differ between the agreement and disagreement groups. The agreement group had more highly educated participants than that of disagreement group ([college and above] 15.81% vs. 8.20%). Furthermore, highly educated participants had a greater odds of being in the agreement group (OR 2.31, 95% confidence interval [CI] 0.84–6.34) than did less educated participants. Regarding economic status, in the agreement group, more participants had a low economic status than in the disagreement group (49.15% vs. 36.07%). Participants with low economic status had a greater odds of being in the agreement group (OR 2.09, 95% CI 0.60–7.27). Finally, married participants had a greater odds of being in the agreement group than did unmarried participants (OR 1.71, 95% CI 0.96–3.05) (Table 2). 3.3. Association between ADs attitudes and physical and mental health status Nine participants, all of whom were in the agreement group, reported problems with self-care. Regarding comorbidities, participants with “other diseases” had a greater odds of being in the agreement group compared with participants without comorbidities (aOR 3.62, 95% CI 1.11–11.82). This category includes diseases other than metabolic diseases or cancers. In terms of nutritional status, 10 persons were categorized as malnourished and all of them were in the agreement group. Participants who showed poor cognitive function had a greater odds of being in the agreement group (aOR 2.10, 95% CI 0.89–4.97) then participants with normal cognitive function after adjustment for age, gender, education level, economic status, marital status, religious status. In terms of physical performance, 14 subjects were categorized as at-risk, most of whom (n = 13) were in the agreement group. Other factors, such as self-rated health, fall experience, IADL score, social support and depression were not significantly different between the two groups. Furthermore, none of these factors affected the odds of being in the agreement group (Table 3). 157
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Table 2 Comparison of demographic characteristics by attitudes toward advance directives. Attitudes toward advance directives Disagreement (n = 61) n
Agreement (n = 234) %
n
%
OR (95% CI)c
P for trend
0.155
0.98 (0.94–1.03)
0.426
Age, mean (SD)
74.11 (5.06)
Gender Male Female
13 48
21.31 78.69
71 163
30.34 69.66
0.164
1.00 0.62 (0.32–1.22)
0.167
Education level Less than middle school Less than high school Less than college College and above
35 12 9 5
57.38 19.67 14.75 8.20
112 34 51 37
47.86b 14.53 21.79 15.81
0.183
1.00 0.89 (0.41–1.89) 1.77 (0.79–3.96) 2.31 (0.84–6.34)
0.052
Economic status (self-reported) High Middle Low
4 35 22
6.56b 57.38 36.07
10 109 115
4.27 46.58 49.15
0.176
1.00 1.25 (0.37–4.22) 2.09 (0.60–7.27)
0.068
Marriage Unmarrieda Married
38 23
62.30 37.70
115 119
49.15 50.85
0.067
1.00 1.71 (0.96–3.05)
0.069
Religion Do not have Have
16 45
26.23 73.77
54 180
23.08 76.92
0.606
1.00 1.19 (0.62–2.26)
0.606
a b c
73.40 (6.50)
P-value
Unmarried participants included those who were divorced, widowed, and never married. Total percentages may not equal 100% because of rounding off. OR = odds ratio, CI = confidence interval.
To encourage end-of-life discussions, educational materials or media campaigns might be helpful (Alano et al., 2010; High, 1993). However, in some studies, using written materials without direct counseling was relatively ineffective for increasing AD completion (Ramsaroop, Reid, & Adelman, 2007). Indeed, provision of oral information over multiple sessions was found to be the most successful intervention (Bravo, Dubois, & Wagneur, 2008). Thus, face-to-face discussion should be encouraged. To support such discussion, specific education for family members and health professionals might be needed. On the other hand, to ensure active end-of-life discussion, the development of policies supporting it would be required. Additionally, reimbursement for ACP consultation would be helpful. Recently in South Korea, a law recognizing the validity of ACP and ADs has been legislated, however, sufficient discussion is required before acting the law. In such discussions, it should be considered that older adults’ education level, economic status, physical functioning, and self-perceived burden can affect their perspectives on ACP. In other words, efforts enabling older adults to frankly express their hopes for ADs and end-of-life care, not based on such conditions, are needed. This study had some limitations. First, there were inequalities in general characteristics of the subjects included in the agreement and disagreement groups, such as educational level, economic level, marital status, and religion. These differences may have affected the relationship between other factors and attitudes toward ADs. On the other hand, however, differences in the characteristics may also be considered as important factors affecting the attitudes toward ADs. Second, although the question of necessity of ADs was most important, it was evaluated with only one question. ADs may include diverse options and the format can be varied. In future studies, it is expected that attitudes toward such varied options of ADs could be studied using more detail questions on ADs. Third, participants were recruited from one region of South Korea, so the results may not be generalizable. Korean culture and the economic status of the region might have affected the results. Fourth, participants were recruited from a senior welfare center, so their physical function might be better than that of other older adults.
Confucian cultures of Eastern Asia, burdening others is considered highly discourteous. This is called meiwaku in Japan, which means causing trouble to others, and should be avoided (Bito et al., 2007). A study on end-stage cancer patients and their family caregivers in South Korea showed that patients who perceived themselves as burdens to their families were more likely to prefer palliative care over life-sustaining treatment (Lee et al., 2015). Therefore, in end-of-life decisionmaking, burden on family seems to be very important factor for older adults. The high agreement on ADs among respondents with poor physical functioning and problem in self-care could be understood in this context. Both in this study and in previous studies (Alano et al., 2010), more married people agreed on ADs than did unmarried people. Again, not wanting to burden spouses could explain the result. In addition, as in other studies, patients appear to consider ACP as means of avoiding placing undue responsibility for end-of-life decision-making on loved ones (Alano et al., 2010; Chan, 2007). This study revealed that discussion of end-of-life issues with family members would help older adults agree on ADs. The older adults who had discussed their end-of-life care with family members had a greater odds of being in the agreement group compared to participants who had not had such a discussion. A similar trend, albeit not as strong, was observed for discussion with health professionals. Thus, discussions with older adults on end-of-life care may improve their attitudes toward ADs. This accords somewhat with an earlier intervention study on community-dwelling older adults, wherein provision of educational material increased use of ADs, and the increase was greater when education was provided in a face-to-face meeting (High, 1993). However, in the present study, very few participants had experienced a discussion on end-of-life care with family members or health professionals. In South Korea, conversations about death can be considered an assault on a person’s wellbeing (Blank, 2011). Thus, caregivers and health professionals may feel it to be disrespectful to discuss end-of-life care. However, as shown in this study, many older adults have positive attitudes towards ADs. Thus, ACP should be supported so that older adults can openly express their hopes about end-of-life care. 158
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Table 3 Comparison of physical and mental health status by attitudes toward advance directives. Attitudes toward advance directives
Health-related quality of lifea Mobility No problems Problems Self-care No problems Problems Usual activity No problems Problems Pain/discomfort No problems Problems Depression/anxiety No problems Problems Self-rated health Good Fair Poor Comorbidities None Hypertension, diabetes, or dyslipidemiab Stroke, angina or cancer Other diseases IADLc Independent Dependent Social supportd Loneliness, mean (SD) Social network, mean (SD) Depressive moode Not depressive Depressive Cognitive functionf,i Normal Poor Nutritiong,i Normal Risk of malnutrition Malnutrition Physical performanceh Normal Frail At-risk Fall in previous 6 months No Yes
Disagreement (n = 61)
Agreement (n = 234)
n
n
%
P-value
OR (95% CI)l
aOR (95% CI)m
%
48 13
78.69 21.31
198 36
84.62 15.38
0.268
1.00 0.67 (0.33–1.36)
1.00 0.72 (0.34–1.50)
61 0
100.00 0.00
225 9
96.15 3.85
0.120
1.00 N/Aj
1.00 N/Aj
55 6
90.16 9.84
218 16
93.16 6.84
0.427
1.00 0.67 (0.25–1.80)
1.00 0.76 (0.27–2.11)
32 29
52.46 47.54
122 112
52.14 47.86
0.964
1.00 1.01 (0.58–1.78)
1.00 1.01 (0.55–1.84)
48 13
78.69 21.31
175 59
74.79 25.21
0.527
1.00 1.24 (0.63–2.46)
1.00 1.14 (0.56–2.33)
18 24 19
29.51 39.34 31.15
81 95 58
34.62k 40.60 24.79
0.564
1.00 0.88 (0.45–1.73) 0.68 (0.33–1.40)
1.00 0.70 (0.34–1.44) 0.57 (0.26–1.24)
12 36 8 5
19.67 59.02 13.11 8.20
30 138 25 41
12.82k 58.97 10.68 17.52
0.208
1.00 1.53 (0.71–3.29) 1.25 (0.44–3.54) 3.28 (1.04–10.30)
1.00 1.61 (0.73–3.54) 1.16 (0.39–3.48) 3.62 (1.11–11.82)
50 11
81.97 18.03
203 31
86.75 13.25
0.341
1.00 0.69 (0.33–1.48)
1.00 0.58 (0.26–1.28)
0.329 0.309
0.96 (0.87–1.05) 0.90 (0.74–1.10)
0.96 (0.87–1.05) 0.89 (0.73–1.10)
10.69 (3.39) 1.82 (1.64)
10.24 (3.18) 1.62 (1.25)
34 27
55.74 44.26
138 96
58.97 41.03
0.648
1.00 0.88 (0.50–1.55)
1.00 0.77 (0.42–1.43)
52 8
86.67 13.33
188 46
80.34 19.66
0.259
1.00 1.59 (0.71–3.58)
1.00 2.10 (0.89–4.97)*
47 14 0
77.05 22.95 0.00
179 44 10
76.82k 18.88 4.29
0.221
1.00 0.83 (0.42–1.63) N/Aj
1.00 0.91 (0.44–1.85) N/Aj
47 13 1
77.05 21.31 1.64
190 31 13
81.20k 13.25 5.56
0.151
1.00 0.59 (0.29–1.21) 3.22 (0.41–25.20)
1.00 0.68 (0.31–1.50) 4.09 (0.50–33.29)
48 13
78.69 21.31
198 36
84.62 15.38
0.268
1.00 0.67 (0.33–1.36)
1.00 0.60 (0.28–1.27)
n
Health-related quality of life was assessed by the 5 subscales of the EQ-5D questionnaire; scores of greater than 1 were categorized as “problems”. Participants with stroke, angina, myocardial infarction, or cancer were excluded. c IADL = instrumental activities of daily living; scores of > 10 indicated dependency. d Social support was measured by the social domain of the Comprehensive Frailty Assessment Instrument; higher scores indicate greater social support. e Depressive symptoms were measured by the Geriatric Depression Scale Short Form Korea Version; participants with a score of 5 or more were considered as having depressive symptoms. f Cognitive function was measured by Mini-Cog test. g Nutritional status was measured by using the Mini-Nutritional Assessment Short Form Korea version. h Physical performance was assessed by a short physical performance battery. i There was one missing response in each of cognitive function and nutrition assessment. j Calculation of odds ratios was not possible because some categories did not contain a value. k Total percentages may not equal 100% because of rounding off. l OR = odds ratio, CI = confidence interval. m aOR = adjusted odds ratio; these ORs were adjusted for age, gender, education level, economic status, marital status, religious status. n For odds ratios with asterisk (*), p-values were < 0.10. a
b
Lastly, the part of the questionnaire asking about end-of-life care and ADs was optional, so only participants who agreed to respond to that part were included in the analysis. Such patients may have had more positive attitudes toward end-of-life issues, which in turn might have
In fact, the prevalence of dependency according to an IADL assessment was much lower among the present participants than among the general population (Jung, Kim, Choi, Lee, & Park, 2009). Thus, participants’ responses might have been affected by their physical condition. 159
Archives of Gerontology and Geriatrics 74 (2018) 155–161
J.E. Lee et al.
Table 4 Comparison of personal experiences by attitudes toward advance directives. Attitudes toward advance directives
Hospital service use for last 6 months Outpatient visit No Yes Emergency room visit No Yes Death-related experiencesa Hospital admission No Yes Hospital admission of family member members No Yes Caregiving of patient at EOLa,c No Yes Experienced CPRb No Yes Witnessed CPRb No Yes Witnessed death of an acquaintance No Yes Experienced discussion With family members No Yes With health professionals No Yes
Disagreement (n = 61)
Agreement (n = 234)
n
n
%
P-value
OR (95% CI)d
aOR (95% CI)e
%
8 53
13.11 86.89
36 198
15.38 84.62
0.658
1.00 0.83 (0.36–1.89)
1.00 0.84 (0.36–1.98)
61 0
100.00 0.00
220 14
94.02 5.98
0.050
1.00 N/Af
1.00 N/Af
23 23
50.00 50.00
98 63
60.87 39.13
0.187
1.00 0.64 (0.33–1.24)
1.00 0.65 (0.32–1.33)
30 16
65.22 34.78
99 64
60.74 39.26
0.581
1.00 1.21 (0.61–2.40)
1.00 1.21 (0.59–2.49)
33 13
71.74 28.26
118 45
72.39 27.61
0.930
1.00 0.97 (0.47–2.00)
1.00 0.94 (0.43–2.05)
46 0
100.00 0.00
158 5
96.93 3.07
0.229
1.00 N/Af
1.00 N/Af
44 2
95.65 4.35
143 20
87.73 12.27
0.122
1.00 3.08 (0.69–13.68)
1.00 4.22 (0.89–20.13)*g
27 19
58.70 41.30
103 60
63.19 36.81
0.579
1.00 0.83 (0.42–1.61)
1.00 0.71 (0.35–1.43)
54 7
88.52 11.48
183 51
78.21 21.79
0.071
1.00 2.15 (0.92–5.01)*
1.00 2.12 (0.88–5.11)*
57 4
93.44 6.56
214 20
91.45 8.55
0.613
1.00 1.33 (0.44–4.05)
1.00 1.13 (0.35–3.62)
a Experience was within the previous 5 years. There were 88 missing responses for experience of hospital admission and 86 missing. responses for the other questions on death-related experience. b CPR = cardiopulmonary resuscitation. c EOL = end-of-life. d OR = odds ratio, CI = confidence interval. e aOR = adjusted odds ratio; these ORs were adjusted for age, gender, education level, economic status, marital status, self-rated health, comorbidities, and depression. f Calculations of odds ratios were not possible because some categories did not contain values. g For odds ratios with asterisk (*), p-values were < 0.10.
University as part of a joint research project of the College of Medicine and College of Nursing [grant number 800-20150098]. And we appreciate the advice and assistance of The Korean Geriatrics Society.
introduced bias into the results. 5. Conclusion
References
In conclusion, many community-dwelling older adults in South Korea agreed that ADs were necessary. The factors associated with agreement were high education level, low economic status, being married, poor cognitive function, having problems in self-care, having poor physical functioning, having experiences of emergency room visits and CPR, and having had discussions about end-of-life care with family members. Thus, end-of-life discussion should be encouraged and educational programs and policies for it should be prepared. The abovementioned factors affecting the older adults’ attitudes should be considered in developing such programs and policies.
Alano, G. J., Pekmezaris, R., Tai, J. Y., Hussain, M. J., Jeune, J., Louis, B., ... Lesser, M. (2010). Factors influencing older adults to complete advance directives. Palliative & Supportive Care, 8(3), 267–275. Bito, S., Matsumura, S., Singer, M. K., Meredith, L. S., Fukuhara, S., & Wenger, N. S. (2007). Acculturation and end-of-life decision making: Comparison of Japanese and Japanese-American focus groups. Bioethics, 21(5), 251–262. Blank, R. H. (2011). End-of-life decision making across cultures. Los Angeles CA: SAGE Publications Sage CA. Bravo, G., Dubois, M.-F., & Wagneur, B. (2008). Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Social Science & Medicine, 67(7), 1122–1132. Chan, M. (2007). Self-perceived burden in palliative care. Palliative Medicine, 3, 22. Cheung, K., Oemar, M., Oppe, M., & Rabin, R. (2009). EQ-5D user guide: Basic information on how to use EQ-5D. Rotterdam: EuroQol Group. Davison, S. N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ, 333(7574), 886. De Witte, N., Gobbens, R., De Donder, L., Dury, S., Buffel, T., Verte, D., & Schols, J. (2013). Validation of the comprehensive frailty assessment instrument against the tilburg frailty indicator. European Geriatric Medicine, 4(4), 248–254. High, D. M. (1993). Advance directives and the elderly: A study of intervention strategies to increase use. The Gerontologist, 33(3), 342–349.
Disclosure statement No potential conflicts of interest were disclosed. Acknowledgments This study was supported by the College of Medicine, Seoul National 160
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Ramsaroop, S. D., Reid, M., & Adelman, R. D. (2007). Completing an advance directive in the primary care setting: What do we need for success? Journal of the American Geriatrics Society, 55(2), 277–283. Randén, M., Helde-Frankling, M., Runesdotter, S., & Strang, P. (2013). Treatment decisions and discontinuation of palliative chemotherapy near the end-of-life, in relation to socioeconomic variables. Acta Oncologica, 52(6), 1062–1066. 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. Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H., & Clark, D. (2004). Planning for the end of life: The views of older people about advance care statements. Social Science & Medicine, 59(1), 57–68. 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. Starr, J. (2008). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 56(1) 168–168. Yu, S. J., Chae, Y. R., Choi, Y. S., & Kim, H. S. (2013). Patients’ perceptions of advance directives and preferences for medical care near the end of life in South Korea. Journal of Hospice & Palliative Nursing, 15(4), 233–243.
Jee, Y. J., & Lee, Y. B. (2013). Factors influencing depression among elderly patients in geriatric hospitals. Journal of Physical Therapy Science, 25(11), 1445–1449. Jung, J.-Y., Kim, J.-S., Choi, H.-J., Lee, K.-Y., & Park, T.-J. (2009). Factors associated with ADL and IADL from the third Korea national health and nutrition examination survey (KNHANES III), 2005. Korean Journal of Family Medicine, 30(8), 598–6009. Kass-Bartelmes, B. L., & Hughes, R. (2004). Advance care planning: Preferences for care at the end of life. Journal of Pain & Palliative Care Pharmacotherapy, 18(1), 87–109. Korea, S. (2013). Cause of death statistics 2012. Daejeon: Statisrics Korea. Lee, H. S., Kim, H. S., & Jung, Y. M. (2009). Depression and quality of life in Korean elders. Journal of Korean Academy of Community Health Nursing, 20(1), 12–22. Lee, J. E., Shin, D. W., Cho, J., Yang, H. K., Kim, S. Y., Yoo, H. S., & Park, K. (2015). Caregiver burden, patients’ self-perceived burden, and preference for palliative care among cancer patients and caregivers. Psycho-Oncology, 24(11), 1545–1551. McPherson, C. J., Wilson, K. G., & Murray, M. A. (2007). Feeling like a burden to others: A systematic review focusing on the end of life. Palliative Medicine, 21(2), 115–128. Mullick, A., Martin, J., & Sallnow, L. (2013). Advance care planning. BMJ, 347(7930), 28–32. Nicholas, L. H., Langa, K. M., Iwashyna, T. J., & Weir, D. R. (2011). Regional variation in the association between advance directives and end-of-life Medicare expenditures. JAMA, 306(13), 1447–1453.
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