- Email: [email protected]
Ethnicity
FEATURE ARTICLE Attitudes Toward Life-Sustaining Treatment: The Role of Race/Ethnicity Eunjeong Ko, PhD, MSW Sunhee Cho, PhD, RN, PMHNP Monica Bonilla, MSW
This study explores attitudes regarding lifesustaining treatments between Korean American and Mexican American older adults. A cross sectional design was employed to survey 122 older adults residing in an urban area on the West Coast (64 Korean Americans and 58 Mexican Americans). Face to face interviews were conducted using a structured questionnaire. Results show that Mexican Americans as compared to Korean American older adults hold more favorable attitudes toward life-sustaining treatments. Participants who were male were more likely to have positive attitudes toward life-sustaining treatments than female. Findings emphasize the importance of culturally sensitive end-of-life care practices which consider cultural variations in life-sustaining treatment preferences. (Geriatr Nurs 2012;33:341-349) nd-of-life care planning is complex, yet imperative for individuals across all racial/ ethnic groups. Among racial/ethnic subgroups, Mexican Americans and Korean Americans are fast growing populations. Among these, Mexican Americans are the largest subgroup of Hispanic origin,1 and Korean Americans are the fourth largest subgroup of Asians.2 The largest groups of Mexican Americans and Korean Americans are concentrated in the urban areas in the West Coast region of the United States. These increasing racially/ethnically diverse groups heighten the importance of culturally competent health care practices. Understanding individuals’ attitudes toward life-sustaining treatment and the role of race and ethnicity can help practitioners provide improved health care services to diverse individuals at the end of life. Life-sustaining treatment (LST) includes medical treatments that are necessary to sustain life or delay death. The concept of LST, or life support, that is commonly presented in the literature includes measures such as a ventilator, artificial nutrition and
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hydration, antibiotics, and dialysis.3,4 They also include less demanding measures including medication, administration of chemotherapy, and antibiotics.5 The contribution of LST in extending one’s life expectancy is well recognized, yet concerns about using them in some terminal conditions has been debated.5,6 Some argue that using biomedical interventions to extend life in some terminal cases is not justified considering the patient’s qualify of life, the medical expenses involved, and the burdens on families and heath care professionals.7-9 Others argue that such life-sustaining interventions provide an opportunity for the patient to recover even if by an as-yet-unknown medical advance.9 Much work has been done to identify the factors that influence a person’s attitudes toward LST. Previous studies3,10,11 report that race/ ethnicity, physical and mental health, spiritual/ religious beliefs, levels of acculturation, and other individual characteristics influence one’s perspectives on the use of life supports. Among these factors, one of the most significant is According to racial/ethnic identity.3,12-14 previous studies,3,13,14 ethnic minorities are more likely to express a preference for LST than white individuals. A recent study3 examining racial difference in LST preferences found that compared with whites, blacks and Hispanics were more likely to prefer life-prolonging drugs even if there were side effects, and they were less likely to want palliative drugs that could potentially shorten their lives. A study that included 4 mixed ethnic groups12 found that European Americans were least likely to approve of LST or want it personally. Mexican Americans were more likely to hold positive attitudes toward LST in general and indicated that they would personally want those treatments if needed. Korean Americans had the most favorable attitudes toward the use of life support treatments but did not want to use them personally. 341
In further examining the differences in end-oflife care preferences among different racial/ethnic groups, level of acculturation has been found to be an important element to consider.10,15,16 Studies including racial/ethnic immigrants report that the extent to which individuals are well acculturated into the mainstream culture influences their end-of-life care.10,15 Participants who were more immersed in the U.S. culture were more likely to opt against the use of heroic measures for end-of-life treatment.10,16 Research also shows that spiritual and religious beliefs play an important role in how individuals perceive end-of-life care.17-19 For those whose religion emphasizes the sanctity of life, a view limiting LST is inconsistent with that belief.7,17 God is the one who has a power to decide whether to forgo or withdraw LST, and removing LST is considered to be against their religion.7,17 In these situations, researchers have found that persons expressing greater adherence to a religion’s beliefs tend to prefer extending their lives with artificial measures than persons expressing lesser adherence.18,19 Despite the somewhat inconsistent findings, it appears that an individuals’ physical and mental health may also be an important factor in making LST decisions. Previous studies have found that changes in a patient’s health status or functionality influences their preferences for LST.20,21 A worsening health condition is associated with a decreasing preference for LST. For example, some patients have refused cardiopulmonary resuscitation or a mechanical ventilator as their health condition worsened.20 Similarly, older adults who were deemed moderately or highly depressed were less likely to choose LST.22 Ganzini et al. (1994)23 also reported that clinical improvement in depression among older adults with severe depression resulted in an increased desire for LST. Other studies,24,25 however, have found no significant relationship between the level of depression and individuals’ preferences for life-sustaining treatments. Besides one’s own medical condition, witnessing others becoming debilitated or having a loved one hospitalized helps to form one’s own endof-life care treatment preferences9,26 and is associated with engaging in some form of advance care planning.27 Individuals who have witnessed close friends and loved ones go through a painful end of life tended to view extending life with artificial measures as 342
futile.9,26 Other individual characteristics might shape attitudes toward LST. The relationship between sociodemographic variables and attitudes toward LST preferences are somewhat inconsistent. Some studies found no gender effect,14,28 but 1 study29 found that male respondents were more likely to favor using LST. In regard to the effects of age on LST preferences, some studies14,29 found that older patients were more likely than younger patients to favor them. On the contrary, the results from another study30 yielded that older adults were more likely to withhold LST. Many studies have examined a racial/ethnic effect on end-of-life care, yet the literature on Hispanic and Asian subgroups such as Mexican Americans and Korean Americans is sparse. A few studies12,31,32 with these 2 groups report some similarities in decision making about terminal care. Compared with Western principles of end-of-life care that focus on the individual’s autonomy and self-determination, these 2 groups value family-centered decision making.12,32 The concept of familismo32 in the Hispanic culture highlights the importance of the family in decision making. Although individuals’ preferences for the unit of decision maker (autonomous versus family) and the number of family members involved in the decision-making process varies, for many Hispanics, the voice of family members in the process is important. Similarly, many Korean Americans consider it important for other family membersdin particular, childrendto be involved in decisions about end of life.33 The concept of filial piety in Korean culture highlights the moral duty of children toward their parents, which plays an important role in end-of-life decision making.12,31 Prolonging or saving parents’ lives is consistent with the concept of filial piety, although many older adults are often willing to negotiate decision making about the use of LST to minimize the emotional agony their children might experience by “letting go” of their parents.33 Despite the similar values shared between the 2 groups, there is still much to learn about older adults’ attitudes toward end-of-life care among Mexican Americans and Korean Americans. Gaining knowledge about how older adults view LST and to what extent it varies by racial/ethnic groups is essential because it can guide health care professionals toward promoting culturally Geriatric Nursing, Volume 33, Number 5
competent end-of-life care practices. Building on previous literature, this study aims to explore differences in attitudes toward LST between Korean American and Mexican American older adults. It also examines whether ethnic differences in attitudes toward LST remain after controlling for other related variables.
Methods Design This study used a cross sectional design of 122 older adults (64 Korean American and 58 Mexican American older adults) who were interviewed in person. Before the interviews, written informed consent in Korean or Spanish was obtained from the participants. Research protocols were approved by the San Diego State University Institutional Review Board (IRB). Sample A convenience sampling method was used to select the participants. After IRB approval, participants were recruited from various sites including 2 senior housing facilities, 3 senior centers, and a church in an urban area of the West Coast. An invitation to participate in the study was made via an announcement during lunch hours at the senior centers and by posting flyers at all of the study sites. At the end of the announcement, seniors who were interested in participating in the study were asked to provide their name and contact information on a sign-up sheet passed around the dining hall or by contacting the researcher or research assistant to schedule an appointment. One hundred twenty-seven seniors expressed an interest in participating in the study. Before scheduling an appointment for the interview, the participants were screened for eligibility for the study on the basis of several criteria. One of the criteria included cognitive ability, which we assessed by using the Short Portable Mental Status Questionnaire (SPMSQ).34 The SPMSQ consists of 10 items measuring the cognitive functions of time, place, and person. Participants with 3 or 4 errors are considered to have mild cognitive impairment, and those with 0 to 2 errors are considered to have normal mental functioning.34 Participants who had at least 8 correct answers were included in this study. In addition, inclusion criteria were age $60, Geriatric Nursing, Volume 33, Number 5
self-identified Korean or Mexican descent, living in the United States, and members or residents of the selected study sites. Among 127 persons indicating an interest in participating in the study, 4 participants did not meet the eligibility criteria (2 for cognitive ability and 2 for ethnicity). In total, 123 persons agreed to participate and signed the consent form. Responses from 1 participant’s questionnaire were subsequently excluded from the analysis because of an inconsistent response pattern. Thus, for purposes of analysis, the final sample size was 122 (64 Korean Americans, 58 Mexican Americans). Data were collected via face-to-face interviews at a private office or at the participant’s home by a trained bilingual interviewer. Each interview lasted approximately 30 to 40 minutes. The survey instrument was translated into both Korean and Spanish by bilingual professionals. The translated questionnaires were also back-translated into English (translated measures are available from the authors on request). Discrepancies were discussed and the instruments modified as needed. Measures Attitudes Toward Life-Sustaining Treatments. Participants’ positive or negative attitudes regarding LST were assessed via a general attitudes scale developed by Blackhall and colleagues.12 This scale consists of 13 items with 4 Likert type response categories (1 5 strongly disagree to 4 5 strongly agree). Each item assessed whether respondents would agree with the use of LST for themselves in end-of-life situations (e.g., impending death, being in a coma). Sample items included “If a patient is dying, it is best not to prolong their lives by medical means” and “When a person is permanently unconscious (in a coma) with no hope of waking up, medical treatments usually should be used to keep them alive.” For this study, 9 items were included. For the sake of time, we deleted 3 items that focused on the individual’s comfort with life support technology (e.g., “life sustaining machines are painful,” and “The use of life sustaining machines can be humiliating”) and 1 item that was considered redundant. The total score of this revised scale ranged from 9 to 36. A higher total score indicated a more positive attitude toward using LST. Cronbach’s alpha for the revised scale with the current sample of Korean and Mexican Americans was .89. 343
Acculturation. Participants’ acculturation level in language and social preference was measured by the Marin Short Acculturation Scale.35 This scale consists of 12 items with 5 response categories. For the analysis, 1 item (preferred language for listening to radio) was removed because 12.3% of the respondents reported not listening to the radio. Total score ranges were from 11 to 55, with a higher score indicating a greater level of acculturation. Cronbach’s alpha in the original study was .92. In this study, Cronbach’s alpha was .90. Depression. The Geriatric Depression Scale, Short Version36 was used to assess depression. This scale consisted of 15 items with dichotomous response categories (1 5 yes, 0 5 no). This measure was validated with Koreans37 and Hispanics.38 Total score ranges were from 0 to 15, with a higher score indicating a greater level of depression. For the current study, Cronbach’s alpha was .81. Experience of having family or friends admitted to intensive care unit (ICU) was measured by a single item question with dichotomous categories (1 5 yes, 0 5 no). Sociodemographic variables included ethnicity, age, gender, education, and marital status. Data Analysis Korean American and Mexican American older adults were compared on the following variables: age, gender, education, marital status, depression, acculturation, and spiritual perspectives. Independent-sample t tests and chi-square tests were conducted for the continuous variables and the categorical variables, respectively. Income was excluded because 19% had missing data. Hierarchical multiple regression was conducted to examine ethnic differences in attitudes toward LST after controlling for the sociodemographic variables and other health- or culturerelated variables, thereby further increasing the power to detect a meaningful ethnic influence. Before running the multivariate analysis, the relationships of sociodemographic, health, mental health, and acculturation variables with the dependent variable, attitudes toward LST were examined by correlation (for continuous variables) and t test (for categorical variables). Gender (t 5 2.43, P\.05), spiritual perspective (Pearson r 5 .17, P \ .05), and acculturation (r 5 .19, 344
P\.05) were found significantly related to the dependent variable and thus initially entered into the model (Model 1) as possible covariates. Ethnicity alone was then introduced into the model (Model 2). Significant contribution of ethnicity to the attitudes toward life-sustaining treatment was evaluated by testing the R2 change (DR2) between Models 1 and 2. All analyses were conducted at .05 alpha level using SPSS version 16 (SPSS Inc., Chicago, IL).
Results Participant Characteristics Participants’ sociodemographic characteristics are shown in Table 1. In our study sample, the majority were women, but the male proportion was higher for Korean Americans (31.2%) than for Mexican Americans (15.5%), c2(1) 5 4.16, P \ .05). Compared with Mexican Americans, Korean Americans had higher levels of education [t(120) 5 2.05, P 5 .05]. In this study, 13 Mexican Americans were interviewed in English, but all Korean American participants were interviewed in Korean. None of the Korean Americans were U.S. born. Eighteen Mexican American participants were U.S. born, but only 13 of them grew up in the United States upon their birth. The length of stay in the United States was significantly different between the 2 groups such that Mexican Americans had a greater length of stay in the United States than Korean Americans [t(65.2) 5 5.9, P \ .01]. The average length of stay in the United States was 23.3 years for Korean Americans and 38.9 years for Mexican Americans. There were no significant differences between the 2 ethnic groups for age and marital status. Participants’ attitudes toward LST, health, mental health, and acculturation-related variables by racial/ethnic groups are presented in Table 2. Attitudes toward LST were significantly different between groups in that Mexican Americans were more positive toward using LST than Korean Americans [t(82.4) 5 5.60, P \ .01]. In terms of acculturation, Mexican Americans had a higher level of acculturation [t(84.4) 5 6.35, P \ .01]. Participants’ spiritual perspectives, depression, family/friend in ICU, and the number of visits to doctors in the previous 6 months showed no differences between the groups. Geriatric Nursing, Volume 33, Number 5
Table 1. Sociodemographic Variables by Ethnicity Variable Age Gender Female Male Education Marital status Married Separated Divorced Widowed Never married
Korean Americans (N 5 64)
Mexican Americans (N 5 58)
N (%)/M (SD)
N (%)/M (SD)
76.0 (6.16)
75.0 (7.32)
44 (68.8%) 20 (31.2%) 10.0 (4.63)
49 (84.5%) 9 (15.5%) 8.36 (4.47)
34 (53.1%) 1 (1.6%) 2 (3.1%) 26 (40.6%) 0 (0%)
19 (32.8%) 3 (5.2%) 7 (12.1%) 28 (48.3%) 1 (1.7%)
Factors Associated with Attitudes Toward LST Hierarchical multiple regression was performed to examine ethnic effect as a predictor of attitudes toward LST after controlling for sociodemographic and other health- or culturerelated variables. In the initial model (Model 1), gender, acculturation, and spiritual perspective together accounted for 9.2% of the variance in the outcome variable, R2 5 .09, F(3, 115) 5 3.88, P \ .05. In step 2, the addition of ethnicity into the model produced a significant R2 increase, DR2 5 .20, F(1, 114) 5 31.96, P \ .01, resulting in a 29.1% outcome variance explained in Model 2, R2 5 .29, F(4, 114) 5 11.68, P \ .01 (see Table 3). Mexican Americans had more positive attitudes
P Value .40 .04
.05 .08
toward using LST than Korean Americans, b 5 5.35, b 5 .54, t(114) 5 5.65, P \ .01. Also, men were more likely to have positive attitudes than their female counterparts, b 5 3.48, b 5 .30, t(114) 5 3.60, P \ .01.
Discussion In this convenience sample, we found ethnic differences in attitudes toward LST after controlling for other variables. Compared with Korean Americans, Mexican Americans were more likely to favor using life supports at the end of life. More positive preferences among Mexican Americans in this convenience sample might be related to their belief about the functions of LST. A previous
Table 2. Attitudes Toward Life-Sustaining Treatment (LST), Health, Mental Health, and Acculturation by Ethnicity Korean Americans (N 5 64)
Mexican Americans (N 5 58)
Variable
N (%)/M (SD)
N (%)/M (SD)
P
Attitudes toward LST No. of visits to doctor in 6 months Experience having family/friends in intensive care unit Spiritual perspective Depression Acculturation
16.34 (5.86) 3.6 (3.7) 34 (53.1%)
20.76 (2.23) 3.9 (6.1) 27 (54.0%)
\.01 .96 .93
38.93 (10.27) 2.3 (2.5) 15.9 (5.0)
37.83 (7.45) 1.5 (2.5) 24.9 (9.7)
.49 .06 \.01
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Table 3. Summary of Multiple Regression Analysis for Attitudes Toward LST Variable Model 1 Gender Acculturation Spiritual perspective Model 2 Gender Acculturation Spiritual perspective Ethnicity
b
SE
t
b
2.15 .10 .07
1.1 .05 .05
2.02 2.04 1.38
.18* .18* .12
3.48 .05 .05
.97 .05 .05
3.59 1.03 1.05
.30† .10 .08
5.35
.95
5.65
.54†
Model 1: R2 5 .09, adjusted R2 5 .07, P \ .05. Model 2: R2 5 .29, Adjusted R2 5 .27, DR2 5 .20 P \ .01. *P \ .05. † P \ .01.
study with Hispanics3 found that some believed LST would help them resume their normal functions. This was supported in a previous study12 showing that Mexican Americans believed doctors would not suggest LST if there is no hope for improvement. The meaning attached to the concept of lifesaving treatments might vary by race/ethnicity; this needs to be explored when assisting patients’ end-of-life care planning in clinical settings. Korean Americans in this convenience sample had less favorable attitudes toward LST than Mexican Americans. Situational factorsdin particular, immigration-related situations (e.g., low socioeconomic status, perceived burdens)d may influence participants’ attitudes toward LST and may need to be considered to understand preference for LST. For example, concerns of being a burden on one’s children is commonly addressed in end-of-life care6 such that perceived burdens affect decision making for LST.39 Although this concern is applied to every culture regardless of ethnic group, perceived burdens on family might be greater for Korean Americans who are mostly foreign-born and migrated to the United States at a relatively late age40; they may also need more assistance from their family members because of financial constraints or have limited support networks in the United States. Moreover, the cultural expectation of children’s duty that attempts to save parents’ lives ascribed 346
by filial piety may increase the Korean American participants’ sense of burden as well. Moreover, the cultural expectation ascribed by filial piety sets forth the notion that children should attempt to save their parents’ lives. However, parents may forgo life-prolonging measures so as not to be a burden to their children. Although this study was not focused on gender differences, gender was nonetheless found to be a significant factor associated with attitudes toward LST. Consistent with the previous study,12 male participants had more favorable attitudes about using life-sustaining treatments than their female counterparts. Positive attitudes toward life-sustaining treatments might need to be understood within the cultural framework of gender roles. Compared with women, men tend to express their preferences decisively, and their assertiveness may influence their decision-making process. The roles of gender are traditionally depicted differently in both groups. For instance, among Hispanic Americans, machismo reflects the male gender role. In male-dominant cultures, women are more responsible for caregiving for family members.32 Similarly, in Korean culture, the man is expected to play a dominant role and the woman is perceived as a caregiver for family members.41 Such traditional gender role differences might affect the more positive attitudes toward life-sustaining treatments among male participants in this study. Although it is important to consider gender roles, this findings needs to be interpreted with caution because this study did not test gender differences by race/ethnicity on attitudes toward LST preferences.
Implications for Practice The findings of this study show racial/ethnic difference in attitudes toward LST that health care professionals, working as a team, need to consider in assisting ethnic minorities in advance care planning. This study suggests that appropriate interventions involving end-of-life decision making should include an understanding of the nuances in attitudes toward end of life that persons of different ethnicities (e.g., Mexican American, Korean American) may hold. This is particularly important because the efforts to promote cultural competence in health care practice go forward. For example, the Medical Orders for Life-Sustaining Treatment (MOLST) or Physician Geriatric Nursing, Volume 33, Number 5
Orders for Life-Sustaining Treatment (POLST) program has been implemented in many states as an alternative paradigm to improve limitations of existing advance directives.42,43 MOLST is helpful for health care teams who do have not frequent contact with patients and their family members because it provides a common ground for understanding patients’ end-of-life wishes.44 With MOLST, the patients’ preferences for LST and comfort care are documented via series of conversations with health care professionals. While conversing with patients, health care professionals need to explore their beliefs and values regarding life-sustaining treatments. For example, meanings attached to “comfort care” might vary among individuals and racial/ethnic groups. Understanding how different subpopulations tend to view end-of-life care could help the health care team consider the level of involvement of the patients and family members in end-of-life decision making. Of course, with awareness of attitudinal differences toward lifesustaining treatments among racial/ethnic groups, it is also important to consider individual differences. Because perspectives regarding endof-life care are guided by various individual characteristics and situational contexts, tailoring an approach to communicating with the individual about his or her needs and concerns is imperative. Lack of attention given to unique meanings, nuances, and interpretation ascribed to racial/ ethnic groups can result in misunderstandings of their preferences. It is also important to assess patients and health care proxies’ knowledge, concerns, and expectations involving life-sustaining measures rather than simply assessing preferences for heroic measures. When assisting patients in documenting LST preferences, health care professionals should review the MOLST with patients and discuss any misunderstandings or misconceptions the patients may have about their preferences. Prior to making decisions, it is important for patients to be sufficiently informed about the types and functions of LST by physicians and nurse practitioners whose signatures validate the MOLST. In addition, other team members, including social workers and clergy, can also assist patients and family members by addressing physical, emotional, psychological, and spiritual aspects of care.43 Holistic approaches by health care teams provide a basis for culturally competent practice. Geriatric Nursing, Volume 33, Number 5
Limitations and Suggestions for Future Research This study has several limitations. This study used a convenience sampling method with a small sample size, which limits generalization of the results. People who did not volunteer to participate in the study might have different characteristics such as poor health and mental health status, which might result in different perspectives toward life-sustaining treatments. Future studies need to employ a probability sampling method with a larger sample size to enhance generalizability. Cultural measures that explore ethnic differences were also limited in this study. Inclusion of measures reflecting cultural characteristics were limited as well. For example, familism is a unique cultural value that guides individuals’ health care decision making. Inclusion of other cultural variables such as familism, fatalism, decision-making style, and perceived burden on family might have yielded different outcomes in this study. Inclusion of these variables in a future study would enable us to better explore the role of ethnicity in attitudes toward life-sustaining treatments. Similarly, a future study that includes qualitative questions in exploring decisions on life-sustaining treatments and reasons for individuals’ choices would enrich our understanding about the role of culture.
Conclusion We explored attitudes toward life-sustaining treatment between Korean American and Mexican American older adults in an urban community setting. In this convenience sample, Mexican Americans were more likely to show positive preferences and attitudes than Korean Americans. The concept of race/ethnicity is imprecise and complex, and it involves beliefs, values, socioeconomic status, and individual situations. Thus, racial/ethnic difference may not be explained by a single factor. Health professionals need to be fully cognizant of this when working with individuals and their family members from racially/ethnically diverse groups.
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38. Fern andez-San Martın MI, Andrade C, Molina J, et al. Validation of the Spanish version of the geriatric depression scale (GDS) in primary care. Int J Geriatr Psychiatry 2002;17:279-87. 39. Kishino M, Miyashita M. Self-perceived burden to family in terminally ill cancer patients at palliative care unit in Japan: perspectives of patients. BMJ Support Palliat Care 2011;1:102-3. 40. Mui A. Stress, coping, and depression among elderly Korean immigrants. J Hum Behav Soc Environ 2001;3: 281-99. 41. Min PG. Changes in Korean immigrants’ gender role and social status, and marital conflicts. Sociol Forum 2001;16: 301-20. 42. Hickman SE, Nelson CA, Moss AH, et al. Use of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in the hospice setting. J Palliat Med 2009;12:134-41. 43. Bomba PA, Morrissey MB, Leven DC. Key role of social work in effective communication and conflict resolution
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process: Medical Orders for Life-Sustaining Treatment (MOLST) program in New York and shared medical decision making at the end of life. J Soc Work End Life Palliat Care 2011;7:56-82. 44. Aultman JM. Ethics of translation: MOLST and electronic advance directives. Am J Bioethics 2010;10: 30-2. EUNJEONG KO, PhD, MSW, is an Assistant Professor at the San Diego State University School of Social Work, San Diego, CA. SUNHEE CHO, PhD, RN, PMHNP, is an Assistant Professor at Mokpo, National University Department of Nursing, Mokpo, Republic of Korea. MONICA BONILLA, MSW, is a Protective Services Worker in County of San Diego-Health and Human Services AgencydChild Welfare Services, San Diego, CA. 0197-4572/$ - see front matter Ó 2012 Mosby, Inc. All rights reserved. doi:10.1016/j.gerinurse.2012.01.009
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This study explores attitudes regarding lifesustaining treatments between Korean American and Mexican American older adults. A cross sectional design was employed to survey 122 older adults residing in an urban area on the West Coast (64 Korean Americans and 58 Mexican Americans). Face to face interviews were conducted using a structured questionnaire. Results show that Mexican Americans as compared to Korean American older adults hold more favorable attitudes toward life-sustaining treatments. Participants who were male were more likely to have positive attitudes toward life-sustaining treatments than female. Findings emphasize the importance of culturally sensitive end-of-life care practices which consider cultural variations in life-sustaining treatment preferences. (Geriatr Nurs 2012;33:341-349) nd-of-life care planning is complex, yet imperative for individuals across all racial/ ethnic groups. Among racial/ethnic subgroups, Mexican Americans and Korean Americans are fast growing populations. Among these, Mexican Americans are the largest subgroup of Hispanic origin,1 and Korean Americans are the fourth largest subgroup of Asians.2 The largest groups of Mexican Americans and Korean Americans are concentrated in the urban areas in the West Coast region of the United States. These increasing racially/ethnically diverse groups heighten the importance of culturally competent health care practices. Understanding individuals’ attitudes toward life-sustaining treatment and the role of race and ethnicity can help practitioners provide improved health care services to diverse individuals at the end of life. Life-sustaining treatment (LST) includes medical treatments that are necessary to sustain life or delay death. The concept of LST, or life support, that is commonly presented in the literature includes measures such as a ventilator, artificial nutrition and
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hydration, antibiotics, and dialysis.3,4 They also include less demanding measures including medication, administration of chemotherapy, and antibiotics.5 The contribution of LST in extending one’s life expectancy is well recognized, yet concerns about using them in some terminal conditions has been debated.5,6 Some argue that using biomedical interventions to extend life in some terminal cases is not justified considering the patient’s qualify of life, the medical expenses involved, and the burdens on families and heath care professionals.7-9 Others argue that such life-sustaining interventions provide an opportunity for the patient to recover even if by an as-yet-unknown medical advance.9 Much work has been done to identify the factors that influence a person’s attitudes toward LST. Previous studies3,10,11 report that race/ ethnicity, physical and mental health, spiritual/ religious beliefs, levels of acculturation, and other individual characteristics influence one’s perspectives on the use of life supports. Among these factors, one of the most significant is According to racial/ethnic identity.3,12-14 previous studies,3,13,14 ethnic minorities are more likely to express a preference for LST than white individuals. A recent study3 examining racial difference in LST preferences found that compared with whites, blacks and Hispanics were more likely to prefer life-prolonging drugs even if there were side effects, and they were less likely to want palliative drugs that could potentially shorten their lives. A study that included 4 mixed ethnic groups12 found that European Americans were least likely to approve of LST or want it personally. Mexican Americans were more likely to hold positive attitudes toward LST in general and indicated that they would personally want those treatments if needed. Korean Americans had the most favorable attitudes toward the use of life support treatments but did not want to use them personally. 341
In further examining the differences in end-oflife care preferences among different racial/ethnic groups, level of acculturation has been found to be an important element to consider.10,15,16 Studies including racial/ethnic immigrants report that the extent to which individuals are well acculturated into the mainstream culture influences their end-of-life care.10,15 Participants who were more immersed in the U.S. culture were more likely to opt against the use of heroic measures for end-of-life treatment.10,16 Research also shows that spiritual and religious beliefs play an important role in how individuals perceive end-of-life care.17-19 For those whose religion emphasizes the sanctity of life, a view limiting LST is inconsistent with that belief.7,17 God is the one who has a power to decide whether to forgo or withdraw LST, and removing LST is considered to be against their religion.7,17 In these situations, researchers have found that persons expressing greater adherence to a religion’s beliefs tend to prefer extending their lives with artificial measures than persons expressing lesser adherence.18,19 Despite the somewhat inconsistent findings, it appears that an individuals’ physical and mental health may also be an important factor in making LST decisions. Previous studies have found that changes in a patient’s health status or functionality influences their preferences for LST.20,21 A worsening health condition is associated with a decreasing preference for LST. For example, some patients have refused cardiopulmonary resuscitation or a mechanical ventilator as their health condition worsened.20 Similarly, older adults who were deemed moderately or highly depressed were less likely to choose LST.22 Ganzini et al. (1994)23 also reported that clinical improvement in depression among older adults with severe depression resulted in an increased desire for LST. Other studies,24,25 however, have found no significant relationship between the level of depression and individuals’ preferences for life-sustaining treatments. Besides one’s own medical condition, witnessing others becoming debilitated or having a loved one hospitalized helps to form one’s own endof-life care treatment preferences9,26 and is associated with engaging in some form of advance care planning.27 Individuals who have witnessed close friends and loved ones go through a painful end of life tended to view extending life with artificial measures as 342
futile.9,26 Other individual characteristics might shape attitudes toward LST. The relationship between sociodemographic variables and attitudes toward LST preferences are somewhat inconsistent. Some studies found no gender effect,14,28 but 1 study29 found that male respondents were more likely to favor using LST. In regard to the effects of age on LST preferences, some studies14,29 found that older patients were more likely than younger patients to favor them. On the contrary, the results from another study30 yielded that older adults were more likely to withhold LST. Many studies have examined a racial/ethnic effect on end-of-life care, yet the literature on Hispanic and Asian subgroups such as Mexican Americans and Korean Americans is sparse. A few studies12,31,32 with these 2 groups report some similarities in decision making about terminal care. Compared with Western principles of end-of-life care that focus on the individual’s autonomy and self-determination, these 2 groups value family-centered decision making.12,32 The concept of familismo32 in the Hispanic culture highlights the importance of the family in decision making. Although individuals’ preferences for the unit of decision maker (autonomous versus family) and the number of family members involved in the decision-making process varies, for many Hispanics, the voice of family members in the process is important. Similarly, many Korean Americans consider it important for other family membersdin particular, childrendto be involved in decisions about end of life.33 The concept of filial piety in Korean culture highlights the moral duty of children toward their parents, which plays an important role in end-of-life decision making.12,31 Prolonging or saving parents’ lives is consistent with the concept of filial piety, although many older adults are often willing to negotiate decision making about the use of LST to minimize the emotional agony their children might experience by “letting go” of their parents.33 Despite the similar values shared between the 2 groups, there is still much to learn about older adults’ attitudes toward end-of-life care among Mexican Americans and Korean Americans. Gaining knowledge about how older adults view LST and to what extent it varies by racial/ethnic groups is essential because it can guide health care professionals toward promoting culturally Geriatric Nursing, Volume 33, Number 5
competent end-of-life care practices. Building on previous literature, this study aims to explore differences in attitudes toward LST between Korean American and Mexican American older adults. It also examines whether ethnic differences in attitudes toward LST remain after controlling for other related variables.
Methods Design This study used a cross sectional design of 122 older adults (64 Korean American and 58 Mexican American older adults) who were interviewed in person. Before the interviews, written informed consent in Korean or Spanish was obtained from the participants. Research protocols were approved by the San Diego State University Institutional Review Board (IRB). Sample A convenience sampling method was used to select the participants. After IRB approval, participants were recruited from various sites including 2 senior housing facilities, 3 senior centers, and a church in an urban area of the West Coast. An invitation to participate in the study was made via an announcement during lunch hours at the senior centers and by posting flyers at all of the study sites. At the end of the announcement, seniors who were interested in participating in the study were asked to provide their name and contact information on a sign-up sheet passed around the dining hall or by contacting the researcher or research assistant to schedule an appointment. One hundred twenty-seven seniors expressed an interest in participating in the study. Before scheduling an appointment for the interview, the participants were screened for eligibility for the study on the basis of several criteria. One of the criteria included cognitive ability, which we assessed by using the Short Portable Mental Status Questionnaire (SPMSQ).34 The SPMSQ consists of 10 items measuring the cognitive functions of time, place, and person. Participants with 3 or 4 errors are considered to have mild cognitive impairment, and those with 0 to 2 errors are considered to have normal mental functioning.34 Participants who had at least 8 correct answers were included in this study. In addition, inclusion criteria were age $60, Geriatric Nursing, Volume 33, Number 5
self-identified Korean or Mexican descent, living in the United States, and members or residents of the selected study sites. Among 127 persons indicating an interest in participating in the study, 4 participants did not meet the eligibility criteria (2 for cognitive ability and 2 for ethnicity). In total, 123 persons agreed to participate and signed the consent form. Responses from 1 participant’s questionnaire were subsequently excluded from the analysis because of an inconsistent response pattern. Thus, for purposes of analysis, the final sample size was 122 (64 Korean Americans, 58 Mexican Americans). Data were collected via face-to-face interviews at a private office or at the participant’s home by a trained bilingual interviewer. Each interview lasted approximately 30 to 40 minutes. The survey instrument was translated into both Korean and Spanish by bilingual professionals. The translated questionnaires were also back-translated into English (translated measures are available from the authors on request). Discrepancies were discussed and the instruments modified as needed. Measures Attitudes Toward Life-Sustaining Treatments. Participants’ positive or negative attitudes regarding LST were assessed via a general attitudes scale developed by Blackhall and colleagues.12 This scale consists of 13 items with 4 Likert type response categories (1 5 strongly disagree to 4 5 strongly agree). Each item assessed whether respondents would agree with the use of LST for themselves in end-of-life situations (e.g., impending death, being in a coma). Sample items included “If a patient is dying, it is best not to prolong their lives by medical means” and “When a person is permanently unconscious (in a coma) with no hope of waking up, medical treatments usually should be used to keep them alive.” For this study, 9 items were included. For the sake of time, we deleted 3 items that focused on the individual’s comfort with life support technology (e.g., “life sustaining machines are painful,” and “The use of life sustaining machines can be humiliating”) and 1 item that was considered redundant. The total score of this revised scale ranged from 9 to 36. A higher total score indicated a more positive attitude toward using LST. Cronbach’s alpha for the revised scale with the current sample of Korean and Mexican Americans was .89. 343
Acculturation. Participants’ acculturation level in language and social preference was measured by the Marin Short Acculturation Scale.35 This scale consists of 12 items with 5 response categories. For the analysis, 1 item (preferred language for listening to radio) was removed because 12.3% of the respondents reported not listening to the radio. Total score ranges were from 11 to 55, with a higher score indicating a greater level of acculturation. Cronbach’s alpha in the original study was .92. In this study, Cronbach’s alpha was .90. Depression. The Geriatric Depression Scale, Short Version36 was used to assess depression. This scale consisted of 15 items with dichotomous response categories (1 5 yes, 0 5 no). This measure was validated with Koreans37 and Hispanics.38 Total score ranges were from 0 to 15, with a higher score indicating a greater level of depression. For the current study, Cronbach’s alpha was .81. Experience of having family or friends admitted to intensive care unit (ICU) was measured by a single item question with dichotomous categories (1 5 yes, 0 5 no). Sociodemographic variables included ethnicity, age, gender, education, and marital status. Data Analysis Korean American and Mexican American older adults were compared on the following variables: age, gender, education, marital status, depression, acculturation, and spiritual perspectives. Independent-sample t tests and chi-square tests were conducted for the continuous variables and the categorical variables, respectively. Income was excluded because 19% had missing data. Hierarchical multiple regression was conducted to examine ethnic differences in attitudes toward LST after controlling for the sociodemographic variables and other health- or culturerelated variables, thereby further increasing the power to detect a meaningful ethnic influence. Before running the multivariate analysis, the relationships of sociodemographic, health, mental health, and acculturation variables with the dependent variable, attitudes toward LST were examined by correlation (for continuous variables) and t test (for categorical variables). Gender (t 5 2.43, P\.05), spiritual perspective (Pearson r 5 .17, P \ .05), and acculturation (r 5 .19, 344
P\.05) were found significantly related to the dependent variable and thus initially entered into the model (Model 1) as possible covariates. Ethnicity alone was then introduced into the model (Model 2). Significant contribution of ethnicity to the attitudes toward life-sustaining treatment was evaluated by testing the R2 change (DR2) between Models 1 and 2. All analyses were conducted at .05 alpha level using SPSS version 16 (SPSS Inc., Chicago, IL).
Results Participant Characteristics Participants’ sociodemographic characteristics are shown in Table 1. In our study sample, the majority were women, but the male proportion was higher for Korean Americans (31.2%) than for Mexican Americans (15.5%), c2(1) 5 4.16, P \ .05). Compared with Mexican Americans, Korean Americans had higher levels of education [t(120) 5 2.05, P 5 .05]. In this study, 13 Mexican Americans were interviewed in English, but all Korean American participants were interviewed in Korean. None of the Korean Americans were U.S. born. Eighteen Mexican American participants were U.S. born, but only 13 of them grew up in the United States upon their birth. The length of stay in the United States was significantly different between the 2 groups such that Mexican Americans had a greater length of stay in the United States than Korean Americans [t(65.2) 5 5.9, P \ .01]. The average length of stay in the United States was 23.3 years for Korean Americans and 38.9 years for Mexican Americans. There were no significant differences between the 2 ethnic groups for age and marital status. Participants’ attitudes toward LST, health, mental health, and acculturation-related variables by racial/ethnic groups are presented in Table 2. Attitudes toward LST were significantly different between groups in that Mexican Americans were more positive toward using LST than Korean Americans [t(82.4) 5 5.60, P \ .01]. In terms of acculturation, Mexican Americans had a higher level of acculturation [t(84.4) 5 6.35, P \ .01]. Participants’ spiritual perspectives, depression, family/friend in ICU, and the number of visits to doctors in the previous 6 months showed no differences between the groups. Geriatric Nursing, Volume 33, Number 5
Table 1. Sociodemographic Variables by Ethnicity Variable Age Gender Female Male Education Marital status Married Separated Divorced Widowed Never married
Korean Americans (N 5 64)
Mexican Americans (N 5 58)
N (%)/M (SD)
N (%)/M (SD)
76.0 (6.16)
75.0 (7.32)
44 (68.8%) 20 (31.2%) 10.0 (4.63)
49 (84.5%) 9 (15.5%) 8.36 (4.47)
34 (53.1%) 1 (1.6%) 2 (3.1%) 26 (40.6%) 0 (0%)
19 (32.8%) 3 (5.2%) 7 (12.1%) 28 (48.3%) 1 (1.7%)
Factors Associated with Attitudes Toward LST Hierarchical multiple regression was performed to examine ethnic effect as a predictor of attitudes toward LST after controlling for sociodemographic and other health- or culturerelated variables. In the initial model (Model 1), gender, acculturation, and spiritual perspective together accounted for 9.2% of the variance in the outcome variable, R2 5 .09, F(3, 115) 5 3.88, P \ .05. In step 2, the addition of ethnicity into the model produced a significant R2 increase, DR2 5 .20, F(1, 114) 5 31.96, P \ .01, resulting in a 29.1% outcome variance explained in Model 2, R2 5 .29, F(4, 114) 5 11.68, P \ .01 (see Table 3). Mexican Americans had more positive attitudes
P Value .40 .04
.05 .08
toward using LST than Korean Americans, b 5 5.35, b 5 .54, t(114) 5 5.65, P \ .01. Also, men were more likely to have positive attitudes than their female counterparts, b 5 3.48, b 5 .30, t(114) 5 3.60, P \ .01.
Discussion In this convenience sample, we found ethnic differences in attitudes toward LST after controlling for other variables. Compared with Korean Americans, Mexican Americans were more likely to favor using life supports at the end of life. More positive preferences among Mexican Americans in this convenience sample might be related to their belief about the functions of LST. A previous
Table 2. Attitudes Toward Life-Sustaining Treatment (LST), Health, Mental Health, and Acculturation by Ethnicity Korean Americans (N 5 64)
Mexican Americans (N 5 58)
Variable
N (%)/M (SD)
N (%)/M (SD)
P
Attitudes toward LST No. of visits to doctor in 6 months Experience having family/friends in intensive care unit Spiritual perspective Depression Acculturation
16.34 (5.86) 3.6 (3.7) 34 (53.1%)
20.76 (2.23) 3.9 (6.1) 27 (54.0%)
\.01 .96 .93
38.93 (10.27) 2.3 (2.5) 15.9 (5.0)
37.83 (7.45) 1.5 (2.5) 24.9 (9.7)
.49 .06 \.01
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Table 3. Summary of Multiple Regression Analysis for Attitudes Toward LST Variable Model 1 Gender Acculturation Spiritual perspective Model 2 Gender Acculturation Spiritual perspective Ethnicity
b
SE
t
b
2.15 .10 .07
1.1 .05 .05
2.02 2.04 1.38
.18* .18* .12
3.48 .05 .05
.97 .05 .05
3.59 1.03 1.05
.30† .10 .08
5.35
.95
5.65
.54†
Model 1: R2 5 .09, adjusted R2 5 .07, P \ .05. Model 2: R2 5 .29, Adjusted R2 5 .27, DR2 5 .20 P \ .01. *P \ .05. † P \ .01.
study with Hispanics3 found that some believed LST would help them resume their normal functions. This was supported in a previous study12 showing that Mexican Americans believed doctors would not suggest LST if there is no hope for improvement. The meaning attached to the concept of lifesaving treatments might vary by race/ethnicity; this needs to be explored when assisting patients’ end-of-life care planning in clinical settings. Korean Americans in this convenience sample had less favorable attitudes toward LST than Mexican Americans. Situational factorsdin particular, immigration-related situations (e.g., low socioeconomic status, perceived burdens)d may influence participants’ attitudes toward LST and may need to be considered to understand preference for LST. For example, concerns of being a burden on one’s children is commonly addressed in end-of-life care6 such that perceived burdens affect decision making for LST.39 Although this concern is applied to every culture regardless of ethnic group, perceived burdens on family might be greater for Korean Americans who are mostly foreign-born and migrated to the United States at a relatively late age40; they may also need more assistance from their family members because of financial constraints or have limited support networks in the United States. Moreover, the cultural expectation of children’s duty that attempts to save parents’ lives ascribed 346
by filial piety may increase the Korean American participants’ sense of burden as well. Moreover, the cultural expectation ascribed by filial piety sets forth the notion that children should attempt to save their parents’ lives. However, parents may forgo life-prolonging measures so as not to be a burden to their children. Although this study was not focused on gender differences, gender was nonetheless found to be a significant factor associated with attitudes toward LST. Consistent with the previous study,12 male participants had more favorable attitudes about using life-sustaining treatments than their female counterparts. Positive attitudes toward life-sustaining treatments might need to be understood within the cultural framework of gender roles. Compared with women, men tend to express their preferences decisively, and their assertiveness may influence their decision-making process. The roles of gender are traditionally depicted differently in both groups. For instance, among Hispanic Americans, machismo reflects the male gender role. In male-dominant cultures, women are more responsible for caregiving for family members.32 Similarly, in Korean culture, the man is expected to play a dominant role and the woman is perceived as a caregiver for family members.41 Such traditional gender role differences might affect the more positive attitudes toward life-sustaining treatments among male participants in this study. Although it is important to consider gender roles, this findings needs to be interpreted with caution because this study did not test gender differences by race/ethnicity on attitudes toward LST preferences.
Implications for Practice The findings of this study show racial/ethnic difference in attitudes toward LST that health care professionals, working as a team, need to consider in assisting ethnic minorities in advance care planning. This study suggests that appropriate interventions involving end-of-life decision making should include an understanding of the nuances in attitudes toward end of life that persons of different ethnicities (e.g., Mexican American, Korean American) may hold. This is particularly important because the efforts to promote cultural competence in health care practice go forward. For example, the Medical Orders for Life-Sustaining Treatment (MOLST) or Physician Geriatric Nursing, Volume 33, Number 5
Orders for Life-Sustaining Treatment (POLST) program has been implemented in many states as an alternative paradigm to improve limitations of existing advance directives.42,43 MOLST is helpful for health care teams who do have not frequent contact with patients and their family members because it provides a common ground for understanding patients’ end-of-life wishes.44 With MOLST, the patients’ preferences for LST and comfort care are documented via series of conversations with health care professionals. While conversing with patients, health care professionals need to explore their beliefs and values regarding life-sustaining treatments. For example, meanings attached to “comfort care” might vary among individuals and racial/ethnic groups. Understanding how different subpopulations tend to view end-of-life care could help the health care team consider the level of involvement of the patients and family members in end-of-life decision making. Of course, with awareness of attitudinal differences toward lifesustaining treatments among racial/ethnic groups, it is also important to consider individual differences. Because perspectives regarding endof-life care are guided by various individual characteristics and situational contexts, tailoring an approach to communicating with the individual about his or her needs and concerns is imperative. Lack of attention given to unique meanings, nuances, and interpretation ascribed to racial/ ethnic groups can result in misunderstandings of their preferences. It is also important to assess patients and health care proxies’ knowledge, concerns, and expectations involving life-sustaining measures rather than simply assessing preferences for heroic measures. When assisting patients in documenting LST preferences, health care professionals should review the MOLST with patients and discuss any misunderstandings or misconceptions the patients may have about their preferences. Prior to making decisions, it is important for patients to be sufficiently informed about the types and functions of LST by physicians and nurse practitioners whose signatures validate the MOLST. In addition, other team members, including social workers and clergy, can also assist patients and family members by addressing physical, emotional, psychological, and spiritual aspects of care.43 Holistic approaches by health care teams provide a basis for culturally competent practice. Geriatric Nursing, Volume 33, Number 5
Limitations and Suggestions for Future Research This study has several limitations. This study used a convenience sampling method with a small sample size, which limits generalization of the results. People who did not volunteer to participate in the study might have different characteristics such as poor health and mental health status, which might result in different perspectives toward life-sustaining treatments. Future studies need to employ a probability sampling method with a larger sample size to enhance generalizability. Cultural measures that explore ethnic differences were also limited in this study. Inclusion of measures reflecting cultural characteristics were limited as well. For example, familism is a unique cultural value that guides individuals’ health care decision making. Inclusion of other cultural variables such as familism, fatalism, decision-making style, and perceived burden on family might have yielded different outcomes in this study. Inclusion of these variables in a future study would enable us to better explore the role of ethnicity in attitudes toward life-sustaining treatments. Similarly, a future study that includes qualitative questions in exploring decisions on life-sustaining treatments and reasons for individuals’ choices would enrich our understanding about the role of culture.
Conclusion We explored attitudes toward life-sustaining treatment between Korean American and Mexican American older adults in an urban community setting. In this convenience sample, Mexican Americans were more likely to show positive preferences and attitudes than Korean Americans. The concept of race/ethnicity is imprecise and complex, and it involves beliefs, values, socioeconomic status, and individual situations. Thus, racial/ethnic difference may not be explained by a single factor. Health professionals need to be fully cognizant of this when working with individuals and their family members from racially/ethnically diverse groups.
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38. Fern andez-San Martın MI, Andrade C, Molina J, et al. Validation of the Spanish version of the geriatric depression scale (GDS) in primary care. Int J Geriatr Psychiatry 2002;17:279-87. 39. Kishino M, Miyashita M. Self-perceived burden to family in terminally ill cancer patients at palliative care unit in Japan: perspectives of patients. BMJ Support Palliat Care 2011;1:102-3. 40. Mui A. Stress, coping, and depression among elderly Korean immigrants. J Hum Behav Soc Environ 2001;3: 281-99. 41. Min PG. Changes in Korean immigrants’ gender role and social status, and marital conflicts. Sociol Forum 2001;16: 301-20. 42. Hickman SE, Nelson CA, Moss AH, et al. Use of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in the hospice setting. J Palliat Med 2009;12:134-41. 43. Bomba PA, Morrissey MB, Leven DC. Key role of social work in effective communication and conflict resolution
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process: Medical Orders for Life-Sustaining Treatment (MOLST) program in New York and shared medical decision making at the end of life. J Soc Work End Life Palliat Care 2011;7:56-82. 44. Aultman JM. Ethics of translation: MOLST and electronic advance directives. Am J Bioethics 2010;10: 30-2. EUNJEONG KO, PhD, MSW, is an Assistant Professor at the San Diego State University School of Social Work, San Diego, CA. SUNHEE CHO, PhD, RN, PMHNP, is an Assistant Professor at Mokpo, National University Department of Nursing, Mokpo, Republic of Korea. MONICA BONILLA, MSW, is a Protective Services Worker in County of San Diego-Health and Human Services AgencydChild Welfare Services, San Diego, CA. 0197-4572/$ - see front matter Ó 2012 Mosby, Inc. All rights reserved. doi:10.1016/j.gerinurse.2012.01.009
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