ORIGINAL ARTICLE
The Journal of Nursing Research h VOL. 21, NO. 4, DECEMBER 2013
Life-Sustaining Treatment: A Comparison of the Preferences of Taiwanese Older Adults and Their Family Caregiver Lee-Jen W. Suen1* & Hao-Hsien Lee2 & Diana Lynn Morris3 1
PhD, RN, Associate Professor, School of Nursing, Chang Jung Christian University, Tainan, Taiwan, ROC & 2MD, Vice Superintendent, Chi Mei Hospital, Liouying, Tainan, Taiwan, ROC & 3PhD, RN, Associate Professor, School of Nursing, Case Western Reserve University, Ohio, USA.
ABSTRACT Background: Written advance directives are not common practice in Taiwan; thus, when older adults are critically ill, family members are usually the ones to make decisions regarding lifesustaining treatment. Purpose: This study determined how well the preferences of the family members for the older adults match the preferences of the older adults themselves with regard to life-sustaining treatment. Methods: A cross-sectional comparative descriptive research design was used in this study. Ninety-five pairs of older adults and their families were included in the final analysis. The Life Support Preferences Questionnaire was used to measure lifesustaining preferences. Paired- sample t tests were performed to compare the mean differences between the older adults’ preferences and the family members’ preferences for these older adults. Results: Family members scored higher on life-sustaining treatment preferences than the older adults for all 32 examined items, with 23 (72%) of these items showing statistical significance. Conclusion/Implications for Practice: Communication between older adults and their family members regarding life-sustaining treatment may help prevent older adults from receiving unwanted treatments.
KEY WORDS: life-sustaining treatment, older adults, family members.
Introduction Although scientific and technological advances in medicine have extended the human lifespan through the 20th century, these advances have also changed the dying trajectory. Lifeprolonging treatments are often used to fight death to the very end even with little chance of recovery and, at times, without the patient’s consent. The Patient Self-Determination Act was passed in the United States in 1991 (Emanuel, Weinberg, Gonin, Hummel, & Emanuel, 1993) to allow in-
dividuals to make their own healthcare decisions in advance of their losing the ability to communicate these decisions. Although the autonomy of the individual is supported ethically and legally and most people want to exercise their rights with regard to end-of-life medical treatments (Tulsky, 2005), very often, these final medical decisions are still made by the patient’s family caregivers. The family’s decision, however, should not necessarily be regarded as the patient’s decision (Shalowitz, Garrett-Mayer, & Wendler, 2006). To better understand the perceptions of life-sustaining treatments of Taiwanese older adults and their families, this study was designed to determine how well family member preferences for the patient match those of their older adult wards in Taiwan. Discordance would suggest the need for advance directives or better communication between patients and their families to respect the autonomy of older adults.
Surrogate Preferences and the Patient’s Actual Treatment Wishes Although written healthcare advance directives are drafted so that people are able to exercise their autonomy on personal healthcare decisions, individuals may fail to provide adequate or relevant instructions because of unexpected or complex circumstances (Perkins, 2007). As a consequence, doctors often ask a next-of-kin surrogate to make decisions on the patient’s behalf. Life-sustaining care is typically viewed as a family matter (Wiegand, 2006; Wolff, Dy, Frick, & Kasper, 2007), and treatment decisions are made within a family context (Haley et al., 2002). However, studies found that surrogate preferences may not reflect a patient’s actual treatment wishes (Fagerlin & Schneider, 2004; Marks & Accepted for publication: April 15, 2013 *Address correspondence to: Lee-Jen W. Suen, No. 1, Changda Rd., Gueiren District, Tainan City 71101, Taiwan, ROC. Tel: +886 (6) 278-5123 ext. 3172; E-mail: [email protected] doi:10.1097/jnr.0000000000000006
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The Journal of Nursing Research
Arkes, 2008; Shalowitz et al., 2006). Although family members typically desire the best for a patient, they may lack the knowledge or courage to fulfill their role as a designated healthcare surrogate (Perkins, 2007). An individual’s health decisions are influenced heavily by the healthcare system and cultural background. In Taiwan, National Health Insurance covers more than 99% of residents, so out-of-pocket expenses, including those for lifesustaining treatment and futile care, are fairly modest. With regard to culture, Taiwanese families play a very important role in the life-sustaining treatment of their loved ones. Although the Palliative Ordinance, a more limited form of the Patient Self-Determination Act, has formally allowed a person who is terminally ill to forgo cardiopulmonary resuscitation (CPR) and related treatments since 2000, preparing advance directives is still not a common practice among the general public in Taiwan. In addition, because many elderly patients have difficulty interacting with the modern healthcare system, family members are in charge of making appointments, filling prescriptions, and communicating with healthcare providers. Family members responsible for caring for loved ones who are ill inevitably make major medical decisions on their behalf, even before the loved one becomes incapacitated. Thus, healthcare providers typically rely on family members to make decisions regarding life-sustaining treatment decisions as well. Other cultural factors may also contribute to preventing families from making life-sustaining decisions according to their loved ones’ wishes. In many Asian cultures, open discussion of death-related issues with elderly people is taboo. Even after a spouse or elderly parents have expressed verbally their wishes for end-of-life care, there still is an enormous amount of social pressure from noncaregiver relatives and the community to fight death to the very end. In a qualitative study of the life-support treatment decisions of older Chinese Canadians, study participants expressed concern that their children might advocate more aggressive end-of-life treatments in hopeless situations in line with traditional filial piety mores (Bowman & Singer, 2001). One study found that family caregivers of older people with moderate or severe dementia in Hong Kong were reluctant to forgo life-sustaining treatments even in cases of irreversible coma because of filial duty concerns (Kwok, Twinn, & Yan, 2007). Because of the cultural importance placed on obligation to the parents, some adult children are unwilling to forgo aggressive treatment in hopes of allowing their parents to live even 1 more day. Thus, family surrogates may conform to cultural ideals if they do not have definite or specific instructions from their loved ones regarding life-sustaining treatments. Nevertheless, communication and discussion between the patients and their family members may provide opportunities for the patients to express their decisions for life-sustaining treatments (Norton, Tilden, Tolle, Nelson, & Eggman, 2003). One Korean study found that family cohesion and communication are predictors of accepting withdrawal of life-sustaining treatment for family members who are terminally ill (Jo, An, & Han, 2012).
Lee-Jen W. Suen et al.
Purpose Most studies comparing the preferences for life-sustaining treatment of patients and their surrogates in Taiwan have focused on patients who are terminally ill. As a result, little is known about the differences in these preferences between patients and their families when the patients are older adults with chronic illnesses who still reside in the community. The study explored the extent to which family-member preferences agreed with those of their respective older adults with regard to life-sustaining treatments. This study compared the preferences for life-sustaining treatments among the older adults with those of their family members under eight hypothetical health scenarios.
Methods Design A cross-sectional comparative descriptive research design was used in this study.
Sample Participants were either recruited directly from five community centers or referred by home-health nurses in southern Taiwan. Study criteria for older adults included being over 60 years old, a diagnosis of at least one chronic illness (e.g., cardiovascular disease, pulmonary ailments, diabetes, kidney failure, arthritis), and living in the community. Elderly individuals who could not hear or communicate and those who were hospitalized or living in long-term care facilities were excluded. Inclusion criteria for the family member included having a familial relationship with the older adult, living in the same household or nearby, 20 years old or older, and holding primary responsibility for making the participant’s medical decisions. The family member was typically a spouse, child, sibling, or grandchild. A power analysis (Cohen, 1988) recommended a sample size of 85 older adultsYfamily member pairs to obtain a medium effect size (r = .3) with an alpha (type I error) of .05 and a power of .8. Excluding interviews completed with either only the older adult or only the family member, a total of 95 pairs of older adults and their families were included in the final analysis.
Procedure This study was approved by the university’s institutional review board and conducted in accordance with the university’s ethical guidelines. It was emphasized to the older adults and family members that participation was completely voluntary and that they could withdraw from the study at any time. Data provided by participants were stored and used anonymously. Each participant received an NT$100 (US$3.00) gift certificate upon completion of the interview. Data were collected through face-to-face interviews, mostly
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Life-Sustaining Treatment Preferences
at the home of the older adults or of their family members. The older adults and family members were interviewed separately to enable both parties to express their preferences freely without the presence of another party. When there were two interviewers, the older adult and the family member were interviewed concurrently in separate rooms.
Measures Measures used for both older adults and family members included demographic information, self-reported health status, self-reported chronic conditions, and a modified version of the Life Support Preferences Questionnaire (LSPQ; Coppola et al., 1999). Demographic data collected included age, gender, educational level (on a scale of 1Y8, with 1 as illiterate and 8 as a master’s or higher degree), marital status, and religion. Self-reported health was scored on a scale ranging from 1 (very bad) to 5 (excellent). Self-reported chronic illnesses were limited to health conditions that required visiting a physician during the last 6 months. The LSPQ was used to measure preferences for end-of-life care. The original scale consists of four types of lifesustaining treatments (antibiotics, CPR, gallbladder surgery, and artificial nutrition and hydration) under nine hypothetical health scenarios that assume imminent death without life-sustaining treatment. The hypothetical health scenarios include present health, Alzheimer’s disease with severe cognitive impairment but no physical effect, emphysema with severe shortness of breath but cognitive functions intact, coma with no chance of recovery, coma with the slightest chance of recovery, paralyzed on one side with difficult communications and requiring total care with no chance of recovery, paralyzed on one side with difficult communications and requiring total care with the slightest chance of recovery, terminal cancer with 6 more months to live and no pain, and terminal cancer with 6 more months to live and constant pain. A 5-point Likert scale was used for scoring, with 1 = definitely do not want, 2 = possibly not want, 3 = unsure, 4 = possibly want, and 5 = definitely want. Several groups have used the LSPQ (Beland & Froman, 1995; Froman & Owen, 2005; Parks et al., 2011), and its reliability and validity have been established for both English- and Spanish-language versions (Beland & Froman, 1995; Froman & Owen, 2003). Reliability was tested using estimates of internal consistency with a range of .60Y.94. Two-week testYretest reliability was measured at .73. In terms of construct validity, exploratory and confirmatory factor analysis studies have shown a single dimension underlying the LSPQ (Froman & Owen, 2005). Furthermore, the authors of the LSPQ tested the role of impairment, prognosis, and pain on elderly adults’ preferences for life-sustaining treatment and found that the LSPQ successfully differentiated patient preferences for life-sustaining treatment by health scenario and interventions (Coppola et al., 1999). In the current study, internal consistency (Cronbach’s alpha) was .87 for family members and .88 for older adults.
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This instrument was translated into Mandarin by two bilingual TaiwaneseYAmericans, back-translated by another two bilingual TaiwaneseYAmericans, and tested on five Taiwanese before the study began. The LSPQ was modified to include only eight scenarios, excluding the ‘‘present health condition’’ and changing ‘‘gallbladder surgery’’ to ‘‘surgery’’ to reduce confusion. The older adults were asked to imagine themselves in those health scenarios. The family members were asked to indicate the choice they would make for their loved ones. Because the questionnaire consisted of eight different health scenarios, no total score was calculated. In addition, both the older adults and their family members were asked if they had heard of the Palliative Ordinance, advance directives, and healthcare power of attorney. If they had not, the interviewers provided a brief explanation. Both subject groups were asked their opinion regarding the importance (1 for important, 2 for don’t know, and 3 for not important) of these healthcare regulations.
Analysis Statistical analyses were performed using SPSS for Windows version 14.0 (SPSS, Inc., Chicago, IL, USA). A p value of less than .05 was considered statistically significant. For statistical analysis, education was collapsed to three levels from eight levels, and health was collapsed to three levels from five levels. Differences in awareness of the Palliative Ordinance, advance directives, and healthcare power of attorney between older adults and their families were analyzed using chi-squared statistics. Because data from the older adults and their family members were treated as sample pairs, pairedsample t tests were performed to compare the mean preference differences between the two for each health scenario.
Results Participant Characteristics Table 1 presents demographic information on the older adults and their family members. The older adults ranged from 60 to 90 years old with a mean of 70.8 (SD = 8.9) years old. Slightly over half (56%) were women, 74% were married, 23% were widowed, 61% had an educational level between illiterate and elementary school, and 73% were either Buddhist or Taoist. In terms of self-reported health, 52% had average health, and 37% had bad or very bad health. The number of self-reported chronic conditions ranged from 1 to 7 (M = 2.03, SD = 1.24), with the top five most common chronic conditions: hypertension (29%), diabetes (27%), gastrointestinal complaints (21%), lung disease (19%), and pain (18%). For family members, ages ranged from 21 to 85 years (M = 38.8 years, SD = 12.6 years), 65% were women, 57% were married, 39% were single, 67% had an education beyond junior college, and 68% were Buddhist or Taoist. In terms of self-reported health, 38% were in average 263
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The Journal of Nursing Research
Lee-Jen W. Suen et al.
TABLE 1.
Demographic Characteristics (N = 95 Pairs) Older Adults Variable
%
n
Age (M T SD)
Family Members
70.8 T 8.9
# 2/t
%
n 38.8 T 12.6
t = 22.46* 2 2 = 0.54
Gender Male Female
42 53
44 56
33 62
35 65 22 = 16.52
Marital status Married Widowed Single Separated Education Illiterate to elementary Middle to high school Junior college and above Religion Buddhist or Taoist Catholic or Protestant Agnostic or Atheist Health Bad or very bad Average Good or excellent Chronic illness (M T SD)
70 22 3
74 23 3
54 2 37 2
57 2 39 2
58 24 13
61 25 14
7 24 64
8 25 67
22 = 72.66
22 = 291.6* 69 9 17
73 9 18
64 7 24
68 7 25 22 = 13.71
35 49 11
37 52 11
15 36 44
2.03 T 1.24
16 38 46 0.49 T 0.84
t = 12.76*
*p G .001.
condition, and 46% were in good or excellent condition. The number of self-reported chronic conditions ranged from 0 to 5 (M = 0.49, SD = 0.84), with 60% not reporting any chronic conditions. The top three most common chronic conditions were gastrointestinal complaints (20%), hypertension (5%), and rheumatoid arthritis (2%). Ten percent of the family members were spouses of the older adults, and 90% were children of the older adults. Because this study focused on older adultYfamily member pairs, we performed a paired t test and 2 2 (contingency table) to test the interpair differences and associations. A paired-sample t test found significant differences between older adults and their family members with regard to age (t = 22.46, p G .001) and number of chronic illnesses (t = 12.76, p G .001). The chisquared test found a significant association between older adults and their respective family members with respect to religion (2 2 = 291.6, p G .001) but no association with respect to gender, marital status, educational level, or selfreported health. That is, the older adult and his or her family member are likely to be of the same religion. Table 2 shows percentages of older adults and family members who had heard of the Palliative Ordinance, advance directives, and healthcare decision surrogate and their attitudes toward these healthcare regulations. Thirty-nine percent of older adults versus 67% of family members had heard of the Palliative Ordinance, and 35% of older adults
TABLE 2.
The Palliative Ordinance Familiarity of Older Adults and Their Family Members (N = 95 Pairs) Older Adults
Family Member
Variable
n
%
n
%
#2
Aware of palliative ordinance Importance of palliative ordinance Important No opinion Not important Aware of health living will
37
39
64
67
5.94 11.87*
33 58 4 44
35 61 4 46
54 38 3 73
57 40 3 77
43 45 7 16
45 47 7 17
64 27 4 49
67 28 4 52
Importance of health living will Important No opinion Not important Aware of health decision surrogate Importance of health decision surrogate Important No opinion Not important
2.42 10.43*
4.17 17.62**
38 52 5
40 55 5
56 34 5
*p G .05. **p G .01.
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59 36 5
Life-Sustaining Treatment Preferences
VOL. 21, NO. 4, DECEMBER 2013
versus 57% of family members felt that the Palliative Ordinance was important. Although writing a living will is not a common practice in Taiwan, 46% of older adults and 77% of family members had heard of it, with 45% of older adults and 67% of family members expressing having advance directives to be important. Seventeen percent of older adults and 52% of family members had heard of healthcare decision surrogate, and 40% of older adults and 59% of family members felt it important to have a healthcare decision surrogate. Chi-squared statistics were used to test associations between older adults and their respective family members with regard to these variables. Although no associations were found between older adults and their family members with regard to having heard of the Palliative Ordinance, advance directives, or healthcare decision surrogate, there were significant associations regarding their importance. In other words, both in the paired relationship tended to believe or disbelieve in the importance of these issues, but none of the older adults had completed an advance directive at the time of the study.
Life-Sustaining Treatment Preferences of Older Adults Table 3 presents the mean and standard deviation for lifesustaining treatment preferences of older adults and the preferences of the family members for the older adults for each condition. The four treatment options and eight health scenarios resulted in a total of 32 conditions (items). Table 3 lists the results of paired-sample t tests. For older adults, the average preference ranged from 1.72 to 3.53. Among the 32 items, 23 items (72%) fell within the range encompassed by ‘‘possibly not want’’ and ‘‘unsure’’ (scores = 2Y3). In general, the older adults revealed a low desire for lifesustaining treatment in most health scenarios. Of the 32 items, the most desirable condition was antibiotics for severe emphysema. Nine out of ten of the most desired treatment options were antibiotics and artificial nutrition, in the case of severe emphysema. CPR (six items) and surgery (four items) were among the top 10 least-desired life-sustaining treatment options in the situations of coma without or with
TABLE 3.
Life-Sustaining Treatment Preferences of Older Adults and Their Family Members Antibiotics Item
M
SD
Surgery M
SD
CPR M
SD
Artificial Nutrition M
SD
Severe cognitive impairment, physically unaffected Older adult preference Family member preference
3.21 3.64
1.29** 1.26
2.59 3.11
1.26** 2.25 1.36 2.95
1.28*** 1.50
2.95 3.51
1.45** 1.44
Constant shortness of breath, cognitively unaffected Older adult preference Family member preference
3.53 3.68
1.19 1.26
2.91 3.22
1.28 1.35
2.54 2.96
1.43* 1.52
3.09 3.61
1.42** 1.40
Coma with no chance of recovery Older adult preference Family member preference
2.55 3.05
1.38** 1.36
2.01 2.32
1.17* 1.26
1.78 2.21
1.15* 1.37
2.73 3.27
1.51** 1.59
Coma with a slightest chance of recovery Older adult preference Family member preference
2.63 3.28
1.37*** 1.29
2.15 2.65
1.23** 1.93 1.26 2.39
1.18** 1.36
2.84 3.53
1.46*** 1.45
Severe paralysis with no chance of recovery Older adult preference Family member preference
2.87 3.14
1.33 1.41
2.25 2.51
1.31 1.30
2.02 2.37
1.17* 1.38
2.94 3.34
1.41* 1.57
Severe paralysis with slightest chance of recovery Older adult preference Family member preference
2.91 3.38
1.26** 1.27
2.27 2.51
1.23 1.27
2.01 2.52
1.11** 1.34
2.93 3.48
1.42** 1.49
Terminal cancer without pain Older adult preference Family member preference
2.84 3.25
1.39* 1.40
1.78 1.89
1.09 1.13
1.79 1.76
1.17 1.13
2.77 3.26
1.51* 1.57
Terminal cancer with constant pain Older adult preference Family member preference
2.99 3.54
1.49** 1.37
1.81 1.78
1.15 1.22
1.72 1.78
1.16 1.22
2.67 3.31
1.54** 1.60
Note. On the 5-point Likert scale, 1 represents definitely do not want, and 5 represents definitely want. CPR = cardiopulmonary resuscitation. The * in the rows of older adults are the p values of paired-sample t test comparing the mean desirability between the preferences of the older adults and those of the family members regarding life-sustaining treatments. *p G .05. **p G .01. ***p G .001.
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slightest chance of recovery and terminal cancer with or without constant pain.
Family Members’ Preferences for Life-Sustaining Treatment for Their Loved Ones The preferences of family members for life-sustaining treatment for their loved ones ranged from 1.76 to 3.68. Among the 32 items, 18 items (56%) were between ‘‘unsure’’ to ‘‘possibly want’’ (scores = 3Y4). The family members expressed higher preferences for life-sustaining treatment for their loved ones than what the older adults wanted for themselves. The 10 most preferred treatment options were antibiotics and artificial nutrition in six health scenarios, with antibiotics for severe emphysema being the most desirable condition. Of the 10 least preferred life-sustaining treatment options, six involved CPR and four involved surgery in the conditions of coma without chance of recovery, severe paralysis without chance of recovery, and terminal cancer with or without constant pain. The study found that, for all 32 items, family members had higher preferences for life-sustaining treatment for older adults than what the older adults wished for themselves. Nevertheless, this difference was not statistically significant in nine conditions: antibiotics for severe emphysema and severe paralysis with no chance for recovery; surgery for severe emphysema, severe paralysis with no or slightest chance of recovery, terminal cancer with or without pain; and CPR for terminal cancer with or without pain. Among the 32 items, 23 (72%) items were statistically higher. This suggests that family members will advocate for life-sustaining treatments that exceed the desires of older adults. With regard to health conditions, severe cognitive functional impairment with physical health intact and severe shortness of breath with cognitive function intact were perceived as the most favorable health conditions for both older adults and their families and yielded stronger preferences for life-sustaining treatment as a result. In terms of the types of treatments, surgery and CPR were viewed as less desirable than antibiotics and artificial nutrition. The family members’ preference for antibiotics and artificial nutrition for their wards also significantly exceeded the older adults’ preferences.
Discussion This study compared the preferences of older adults and their family members with regard to life-sustaining treatment preferences for the former. Prognosis and state of consciousness seemed to be the most important factors affecting treatment decisions for both older adults and their family members. Terminal cancer, coma without or with slightest chance of recovery, or severe paralysis without chance of recovery yielded low preferences for life-sustaining treatment. These results are consistent with another study of elderly adults (Coppola et al., 1999) and a bioethical experiment study
Lee-Jen W. Suen et al.
(Feltz & Samayoa, 2012), in which the treatment desirability was also significantly higher for cognitively functional emphysema compared with other health scenarios. In the current study, however, severe cognitive impairment with no physical impairment was viewed less negatively than coma, paralysis, or terminal cancer. In terms of the type of treatment, this study found that surgery and CPR, the more invasive treatments, were less desirable in all health scenarios for both older adults and their family members. Although statistically significant, there were six items in which the mean scores were near or below 2.50 (1 represents definitely do not want and 5 represents definitely want) for both older adults and their family members. Treatments associated with all these items were either CPR or surgery, including CPR for coma with no chance of recovery, coma with slightest chance of recovery, severe paralysis with no chance of recovery, and severe paralysis with slightest chance of recovery and surgery for coma with no chance of recovery and coma with slightest chance of recovery. Although statistically significant, the disagreement between older adults and their family members with regard to CPR or surgery may not be serious. This study result is consistent with other studies (Tang, Liu, Lai, Liu, & Chen, 2005). On the other hand, this study group may have perceived antibiotics as primarily for symptom relief rather than life sustenance or perhaps as less invasive/painful. Food and drink are not only nutrients but also provide care, comfort, and social bonding in many cultures (Christie, 2003) including the Taiwanese culture. In this study, family members indicated preferences for treatment that were higher than the older adults did for themselves on all 32 items. Nearly three quarters of these items (23% or 72%) were significantly higher, and 14 (61%) of these were treatments that used antibiotics and artificial nutrition. This suggests that family members are especially likely to push for more treatment if it is relatively noninvasive. Forgoing artificial nutrition or hydration may be perceived as cruel to the dying person especially when life expectancy is uncertain, so artificial nutrition is considered more desirable. A study of end-of-life care of Taiwanese patients with terminal cancer reported that about 60% of patients and their families opted for intravenous nutrition (Tang et al., 2005). In a study by Coppola et al. (1999); however, artificial nutrition was the least desirable treatment in all health scenarios. Artificial nutrition near death or in a persistent vegetative state has been one of most controversial issues in life-prolonging treatments for many decades, and the debate is likely to continue in the future. In this study, no significant difference was found between family members and older adults with regard to antibiotics and surgery in cases of severe emphysema and severe paralysis without a chance of recovery and of surgery and CPR in terminal cancer with or without pain. These results agree with a previous study finding that surrogate preferences more accurately reflect the patients’ wish for invasive treatments in hopeless health conditions (Sulmasy et al., 1998). Both the patient and his or her family tend to forgo more invasive
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Life-Sustaining Treatment Preferences
treatments if there is no chance of recovery. One study found that caregivers define life-sustaining treatment as clinical improvement (Kuehlmeyer, Borasio, & Jox, 2012). In a medical crisis, family members will often disagree about what should be done for their loved ones, and until consensus is reached, they tend to proceed with aggressive treatments because withholding treatment may be interpreted as ‘‘causing’’ premature patient death (Long, 2005). Tang et al. (2005) found that higher percentages of family caregivers than patients with terminal cancer wanted to continue intervention in all eight life-sustaining treatments presented. Withholding or withdrawing life-sustaining treatments from a patient is a life-or-death decision, and there is no turning back once the patient is dead. Furthermore, withholding or withdrawing life-sustaining treatments may be interpreted negatively as ‘‘giving up,’’ ‘‘passive euthanasia,’’ ‘‘playing God,’’ ‘‘causing death,’’ or ‘‘destroying hope.’’ Family members who prefer to avoid prolonged treatment may be reluctant to admit their preference (Schenker et al., 2012) out of fear of being blamed for depriving their loved ones of life or of being accused of ‘‘wishing to escape the caregiver’s burden.’’ As a result, family members may opt for more aggressive treatments than they actually prefer. One study found that surrogates did not predict their patient’s preferences for life-sustaining treatments accurately because those predictions reflected their own wishes for the patients instead of the patients’ wishes (Marks & Arkes, 2008). This study compared the preferences for life-sustaining treatment of older adults with chronic illnesses against the preferences of their families by analyzing the data pairs. Other studies have similarly found that surrogate preferences often do not agree with those of the patient in healthcare decisions (Phipps et al., 2003; Pruchno, Lemay, Field, & Levinsky, 2005). This phenomenon may be attributed to surrogates failing to predict patient wishes or to surrogates acting in the best interest of patients despite patient preferences. Because of the use of a convenience sample, generalizability is the main limitation of this study. Those older adults and family members willing to discuss the ‘‘taboo issues’’ addressed in this study may hold different perspectives than the general population with regard to life-sustaining treatments. In addition, those who refused to participate in the study also refused to provide demographic information; thus, the differences between participants and nonparticipants cannot be determined. In this study, 90% of the family members were children whose decisions may be more heavily influenced by filial piety mores. If the primary caregiver is a sibling of a similar age, the preferences of life-sustaining intervention for the patient may differ from those presented in the study. Despite these limitations, this study provides real data showing that family members do prefer more lifesustaining treatments for their loved ones than what older adults want for themselves. As a result, overtreatment may override comfort and dignity at the end of life. In Taiwan, physicians rarely discuss life-prolonging treatments with their patients, preferring instead to discuss this
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issue with family members. However, the general lack of open discussion on life-sustaining treatments and end-of-life issues between patients and their families increase the difficulties faced by family members to accurately infer their older adult’s wishes. Recent advocates of patient autonomy have sought to remedy this by encouraging discussion of endof-life care well before the onset of terminal illness. Discussion and communication are necessary to help family members make these critical decisions and to prevent older adults from undergoing treatments they do not wish to receive.
References Beland, D. K., & Froman, R. D. (1995). Preliminary validation of a measure of life support preferences. Journal of Nursing Scholarship, 27(4), 307Y310. doi:10.1111/j.1547-5069.1995.tb00893.x Bowman, K. W., & Singer, P. A. (2001). Chinese seniors’ perspectives on end-of-life decisions. Social Science & Medicine, 53(4), 455Y464. Christie, D. L. (2003). When the patient cannot eat: Artificial nutrition and hydration. In D. L. Christie (Ed.), Last rights: A Catholic perspective on end-of-life decisions (pp. 119Y133). Lanham, MD: Rowman & Littlefield. Cohen, J. (1988). The t test for mean. In J. Cohen (Ed.), Statistical power analysis for the behavioral sciences (2nd ed., pp. 19Y66). Hillsdale, NJ: Erlbaum. Coppola, K. M., Bookwala, J., Ditto, P. H., Lockhart, L. K., Danks, J. H., & Smucker, W. D. (1999). Elderly adults’ preferences for life-sustaining treatments: The role of impairment, prognosis, and pain. Death Studies, 23, 617Y634. doi:10.1080/074811899200803 Emanuel, E. J., Weinberg, D. S., Gonin, R., Hummel, L. R., & Emanuel, L. L. (1993). How well is the patient selfdetermination act working? An early assessment. The American Journal of Medicine, 95(6), 619Y628. doi:10.1016/ 0002-9343(93)90358-V Fagerlin, A., & Schneider, C. E. (2004). Enough. The failure of the living will. The Hastings Center Report, 34, 30Y42. doi:10.2307/3527683 Feltz, A., & Samayoa, S. (2012). Heuristics and life-sustaining treatments. Journal of Bioethical Inquire, 9(4), 443Y455. Froman, R. D., & Owen, S. V. (2003). Validation of the Spanish life support preferences questionnaire (LSPQ). Journal of Nursing Scholarship, 35, 33Y36. doi:10.1111/j.1547-5069.2003.00033.x Froman, R. D., & Owen, S. V. (2005). Randomized study of stability and change in patient’s advance directives. Research in Nursing & Health, 28, 398Y407. doi:10.1002/nur.20094 Haley, W. E., Allen, R. S., Reynolds, S., Chen, H., Burton, A., & Gallagher-Thompson, D. (2002). Family issues in end-of-life decision making and end-of-life care. American Behavioral Scientist, 46(2), 284Y298. doi:10.1177/000276402236680 Jo, K. H., An, G. J., & Han, K. S. (2012). Family factors affecting on withdrawal of life-sustaining treatment in Korea. International Journal of Nursing Practice, 18(6), 552Y558. doi:10.1111/ijn.12009 Kuehlmeyer, K., Borasio, G. D., & Jox, R. J. (2012). How family caregivers’ medical and moral assumptions influence decision making for patients in the vegetative state: A qualitative study. Journal of Medical Ethics, 38(6), 332Y337. doi:10.1136/ medethics-2011-100373
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Kwok, T., Twinn, S., & Yan, E. (2007). The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. Journal of Advanced Nursing, 58(3), 256Y262. doi:10.1111/j.1365-2648.2007.04230.x Long, S. O. (2005). Deciding to treat or not to treat. In S. O. Long (Ed.), Final days (pp. 110Y147). Honolulu, HI: University of Hawaii. Marks, M. A. Z., & Arkes, H. R. (2008). Patient and surrogate disagreement in end-of-life decisions: Can surrogates accurately predict patients’ preferences? Medical Decision Making, 28(4), 524Y531. doi:10.1177/0272989X08315244
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Arnold, R. M., & White, D. B. (2012). I don’t want to be the one saying ‘‘We should just let him die’’: Interpersonal tensions experienced by surrogate decision makers in the ICU. Journal of Internal Medicine, 27(12), 1657Y1665. doi:10.1007/ s11606-012-2129-y Shalowitz, D. I., Garrett-Mayer, E., & Wendler, D. (2006). The accuracy of surrogate decision maker: A systematic review. Archives of Internal Medicine, 166(5), 493Y497. doi:10.1001/ archinte.166.5.493
Norton, S. A., Tilden, V. P., Tolle, S. W., Nelson, C. A., & Eggman, S. T. (2003). Life support withdrawal: Communication and conflict. American Journal of Critical Care, 12(6), 548Y555.
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Parks, S. M., Winter, L., Santana, A. J., Parker, B., Diamond, J. J., Rose, M., & Myers, R. E. (2011). Family factors in end-of-life decision-making: Family conflict and proxy relationship. Journal of Palliative Medicine, 14(2), 179Y184. doi:10.1089/ jpm.2010.0353
Tang, S. T., Liu, T. W., Lai, M. S., Liu, L. N., & Chen, C. H. (2005). Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan. Journal of Pain and Symptom Management, 30(6), 510Y518. doi:10.1016/j.jpainsymman.2005.05.019
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Phipps, E., True, G., Harris, D., Chong, U., Tester, W., Chavin, S. I., & Braitman, L. E. (2003). Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. Journal of Clinical Oncology, 21(3), 549Y554. doi:10.1200/JCO.2003.12.080 Pruchno, R. A., Lemay, E. P., Jr. Field, L., & Levinsky, N. G. (2005). Spouse as health care proxy for dialysis patients: Whose preferences matter? The Gerontologist, 45(6), 812Y819. doi:10.1093/geront/45.6.812 Schenker, Y., Crowley-Matoka, M., Dohan, D., Tiver, G. A.,
Wiegand, D. L. (2006). Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: Interactions between patients’ families, healthcare providers, and the healthcare system. American Journal of Critical Care, 15(2), 178Y187. Wolff, J. L., Dy, S. M., Frick, K. D., & Kasper, J. D. (2007). End-oflife care: Findings from a national survey of informal caregivers. Archives of Internal Medicine, 167(1), 40Y46. doi:10.1001/archinte.167.1.40
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維生處置之決定傾向
VOL. 21, NO. 4, DECEMBER 2013
台灣老人及其家人對維生處置的決定傾向 吳麗珍1* 李浩銑2 Diana Lynn Morris3 1
長榮大學護理學系所副教授 2柳營奇美醫院資深副院長 3 美國凱斯西儲大學護理學系副教授
背 景
在台灣，預立遺囑還不是非常普及。因此，對於病危老年患者是否進行維生處置，多 數是由其家人做決定。
目 的
比較老人本身及其家人對於老人在不同健康情境時的維生決定傾向。
方 法
採橫斷式比較描述性研究，研究對象包括95對社區老人及其家人。使用修改版的Life Support Preferences Questionnaire用以測量維生處置意願傾向，所得資料以paired-sample t-test進行分析。
結 果
在 8 種不同健康情況和 4 種不同維生處置中（共 32 項），這 32 項家人對於維生處置的意 願傾向 ，均高於老人對自己維生處置之意願傾向 ，有 23 項（72%）達統計顯著水準。
結 論 為了使家人的決定忠於老人本身之意願，彼此有必要針對病危時是否接受維生處置進 實務應用 行溝通。
關鍵詞：維生處置決定、老人、家人。
接受刊載：102年4月15日 *通訊作者地址：吳麗珍 71101台南市歸仁區長大路1號 電話：（06）2785123－3172 E-mail: [email protected]
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The Journal of Nursing Research h VOL. 21, NO. 4, DECEMBER 2013
Life-Sustaining Treatment: A Comparison of the Preferences of Taiwanese Older Adults and Their Family Caregiver Lee-Jen W. Suen1* & Hao-Hsien Lee2 & Diana Lynn Morris3 1
PhD, RN, Associate Professor, School of Nursing, Chang Jung Christian University, Tainan, Taiwan, ROC & 2MD, Vice Superintendent, Chi Mei Hospital, Liouying, Tainan, Taiwan, ROC & 3PhD, RN, Associate Professor, School of Nursing, Case Western Reserve University, Ohio, USA.
ABSTRACT Background: Written advance directives are not common practice in Taiwan; thus, when older adults are critically ill, family members are usually the ones to make decisions regarding lifesustaining treatment. Purpose: This study determined how well the preferences of the family members for the older adults match the preferences of the older adults themselves with regard to life-sustaining treatment. Methods: A cross-sectional comparative descriptive research design was used in this study. Ninety-five pairs of older adults and their families were included in the final analysis. The Life Support Preferences Questionnaire was used to measure lifesustaining preferences. Paired- sample t tests were performed to compare the mean differences between the older adults’ preferences and the family members’ preferences for these older adults. Results: Family members scored higher on life-sustaining treatment preferences than the older adults for all 32 examined items, with 23 (72%) of these items showing statistical significance. Conclusion/Implications for Practice: Communication between older adults and their family members regarding life-sustaining treatment may help prevent older adults from receiving unwanted treatments.
KEY WORDS: life-sustaining treatment, older adults, family members.
Introduction Although scientific and technological advances in medicine have extended the human lifespan through the 20th century, these advances have also changed the dying trajectory. Lifeprolonging treatments are often used to fight death to the very end even with little chance of recovery and, at times, without the patient’s consent. The Patient Self-Determination Act was passed in the United States in 1991 (Emanuel, Weinberg, Gonin, Hummel, & Emanuel, 1993) to allow in-
dividuals to make their own healthcare decisions in advance of their losing the ability to communicate these decisions. Although the autonomy of the individual is supported ethically and legally and most people want to exercise their rights with regard to end-of-life medical treatments (Tulsky, 2005), very often, these final medical decisions are still made by the patient’s family caregivers. The family’s decision, however, should not necessarily be regarded as the patient’s decision (Shalowitz, Garrett-Mayer, & Wendler, 2006). To better understand the perceptions of life-sustaining treatments of Taiwanese older adults and their families, this study was designed to determine how well family member preferences for the patient match those of their older adult wards in Taiwan. Discordance would suggest the need for advance directives or better communication between patients and their families to respect the autonomy of older adults.
Surrogate Preferences and the Patient’s Actual Treatment Wishes Although written healthcare advance directives are drafted so that people are able to exercise their autonomy on personal healthcare decisions, individuals may fail to provide adequate or relevant instructions because of unexpected or complex circumstances (Perkins, 2007). As a consequence, doctors often ask a next-of-kin surrogate to make decisions on the patient’s behalf. Life-sustaining care is typically viewed as a family matter (Wiegand, 2006; Wolff, Dy, Frick, & Kasper, 2007), and treatment decisions are made within a family context (Haley et al., 2002). However, studies found that surrogate preferences may not reflect a patient’s actual treatment wishes (Fagerlin & Schneider, 2004; Marks & Accepted for publication: April 15, 2013 *Address correspondence to: Lee-Jen W. Suen, No. 1, Changda Rd., Gueiren District, Tainan City 71101, Taiwan, ROC. Tel: +886 (6) 278-5123 ext. 3172; E-mail: [email protected] doi:10.1097/jnr.0000000000000006
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Arkes, 2008; Shalowitz et al., 2006). Although family members typically desire the best for a patient, they may lack the knowledge or courage to fulfill their role as a designated healthcare surrogate (Perkins, 2007). An individual’s health decisions are influenced heavily by the healthcare system and cultural background. In Taiwan, National Health Insurance covers more than 99% of residents, so out-of-pocket expenses, including those for lifesustaining treatment and futile care, are fairly modest. With regard to culture, Taiwanese families play a very important role in the life-sustaining treatment of their loved ones. Although the Palliative Ordinance, a more limited form of the Patient Self-Determination Act, has formally allowed a person who is terminally ill to forgo cardiopulmonary resuscitation (CPR) and related treatments since 2000, preparing advance directives is still not a common practice among the general public in Taiwan. In addition, because many elderly patients have difficulty interacting with the modern healthcare system, family members are in charge of making appointments, filling prescriptions, and communicating with healthcare providers. Family members responsible for caring for loved ones who are ill inevitably make major medical decisions on their behalf, even before the loved one becomes incapacitated. Thus, healthcare providers typically rely on family members to make decisions regarding life-sustaining treatment decisions as well. Other cultural factors may also contribute to preventing families from making life-sustaining decisions according to their loved ones’ wishes. In many Asian cultures, open discussion of death-related issues with elderly people is taboo. Even after a spouse or elderly parents have expressed verbally their wishes for end-of-life care, there still is an enormous amount of social pressure from noncaregiver relatives and the community to fight death to the very end. In a qualitative study of the life-support treatment decisions of older Chinese Canadians, study participants expressed concern that their children might advocate more aggressive end-of-life treatments in hopeless situations in line with traditional filial piety mores (Bowman & Singer, 2001). One study found that family caregivers of older people with moderate or severe dementia in Hong Kong were reluctant to forgo life-sustaining treatments even in cases of irreversible coma because of filial duty concerns (Kwok, Twinn, & Yan, 2007). Because of the cultural importance placed on obligation to the parents, some adult children are unwilling to forgo aggressive treatment in hopes of allowing their parents to live even 1 more day. Thus, family surrogates may conform to cultural ideals if they do not have definite or specific instructions from their loved ones regarding life-sustaining treatments. Nevertheless, communication and discussion between the patients and their family members may provide opportunities for the patients to express their decisions for life-sustaining treatments (Norton, Tilden, Tolle, Nelson, & Eggman, 2003). One Korean study found that family cohesion and communication are predictors of accepting withdrawal of life-sustaining treatment for family members who are terminally ill (Jo, An, & Han, 2012).
Lee-Jen W. Suen et al.
Purpose Most studies comparing the preferences for life-sustaining treatment of patients and their surrogates in Taiwan have focused on patients who are terminally ill. As a result, little is known about the differences in these preferences between patients and their families when the patients are older adults with chronic illnesses who still reside in the community. The study explored the extent to which family-member preferences agreed with those of their respective older adults with regard to life-sustaining treatments. This study compared the preferences for life-sustaining treatments among the older adults with those of their family members under eight hypothetical health scenarios.
Methods Design A cross-sectional comparative descriptive research design was used in this study.
Sample Participants were either recruited directly from five community centers or referred by home-health nurses in southern Taiwan. Study criteria for older adults included being over 60 years old, a diagnosis of at least one chronic illness (e.g., cardiovascular disease, pulmonary ailments, diabetes, kidney failure, arthritis), and living in the community. Elderly individuals who could not hear or communicate and those who were hospitalized or living in long-term care facilities were excluded. Inclusion criteria for the family member included having a familial relationship with the older adult, living in the same household or nearby, 20 years old or older, and holding primary responsibility for making the participant’s medical decisions. The family member was typically a spouse, child, sibling, or grandchild. A power analysis (Cohen, 1988) recommended a sample size of 85 older adultsYfamily member pairs to obtain a medium effect size (r = .3) with an alpha (type I error) of .05 and a power of .8. Excluding interviews completed with either only the older adult or only the family member, a total of 95 pairs of older adults and their families were included in the final analysis.
Procedure This study was approved by the university’s institutional review board and conducted in accordance with the university’s ethical guidelines. It was emphasized to the older adults and family members that participation was completely voluntary and that they could withdraw from the study at any time. Data provided by participants were stored and used anonymously. Each participant received an NT$100 (US$3.00) gift certificate upon completion of the interview. Data were collected through face-to-face interviews, mostly
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Life-Sustaining Treatment Preferences
at the home of the older adults or of their family members. The older adults and family members were interviewed separately to enable both parties to express their preferences freely without the presence of another party. When there were two interviewers, the older adult and the family member were interviewed concurrently in separate rooms.
Measures Measures used for both older adults and family members included demographic information, self-reported health status, self-reported chronic conditions, and a modified version of the Life Support Preferences Questionnaire (LSPQ; Coppola et al., 1999). Demographic data collected included age, gender, educational level (on a scale of 1Y8, with 1 as illiterate and 8 as a master’s or higher degree), marital status, and religion. Self-reported health was scored on a scale ranging from 1 (very bad) to 5 (excellent). Self-reported chronic illnesses were limited to health conditions that required visiting a physician during the last 6 months. The LSPQ was used to measure preferences for end-of-life care. The original scale consists of four types of lifesustaining treatments (antibiotics, CPR, gallbladder surgery, and artificial nutrition and hydration) under nine hypothetical health scenarios that assume imminent death without life-sustaining treatment. The hypothetical health scenarios include present health, Alzheimer’s disease with severe cognitive impairment but no physical effect, emphysema with severe shortness of breath but cognitive functions intact, coma with no chance of recovery, coma with the slightest chance of recovery, paralyzed on one side with difficult communications and requiring total care with no chance of recovery, paralyzed on one side with difficult communications and requiring total care with the slightest chance of recovery, terminal cancer with 6 more months to live and no pain, and terminal cancer with 6 more months to live and constant pain. A 5-point Likert scale was used for scoring, with 1 = definitely do not want, 2 = possibly not want, 3 = unsure, 4 = possibly want, and 5 = definitely want. Several groups have used the LSPQ (Beland & Froman, 1995; Froman & Owen, 2005; Parks et al., 2011), and its reliability and validity have been established for both English- and Spanish-language versions (Beland & Froman, 1995; Froman & Owen, 2003). Reliability was tested using estimates of internal consistency with a range of .60Y.94. Two-week testYretest reliability was measured at .73. In terms of construct validity, exploratory and confirmatory factor analysis studies have shown a single dimension underlying the LSPQ (Froman & Owen, 2005). Furthermore, the authors of the LSPQ tested the role of impairment, prognosis, and pain on elderly adults’ preferences for life-sustaining treatment and found that the LSPQ successfully differentiated patient preferences for life-sustaining treatment by health scenario and interventions (Coppola et al., 1999). In the current study, internal consistency (Cronbach’s alpha) was .87 for family members and .88 for older adults.
VOL. 21, NO. 4, DECEMBER 2013
This instrument was translated into Mandarin by two bilingual TaiwaneseYAmericans, back-translated by another two bilingual TaiwaneseYAmericans, and tested on five Taiwanese before the study began. The LSPQ was modified to include only eight scenarios, excluding the ‘‘present health condition’’ and changing ‘‘gallbladder surgery’’ to ‘‘surgery’’ to reduce confusion. The older adults were asked to imagine themselves in those health scenarios. The family members were asked to indicate the choice they would make for their loved ones. Because the questionnaire consisted of eight different health scenarios, no total score was calculated. In addition, both the older adults and their family members were asked if they had heard of the Palliative Ordinance, advance directives, and healthcare power of attorney. If they had not, the interviewers provided a brief explanation. Both subject groups were asked their opinion regarding the importance (1 for important, 2 for don’t know, and 3 for not important) of these healthcare regulations.
Analysis Statistical analyses were performed using SPSS for Windows version 14.0 (SPSS, Inc., Chicago, IL, USA). A p value of less than .05 was considered statistically significant. For statistical analysis, education was collapsed to three levels from eight levels, and health was collapsed to three levels from five levels. Differences in awareness of the Palliative Ordinance, advance directives, and healthcare power of attorney between older adults and their families were analyzed using chi-squared statistics. Because data from the older adults and their family members were treated as sample pairs, pairedsample t tests were performed to compare the mean preference differences between the two for each health scenario.
Results Participant Characteristics Table 1 presents demographic information on the older adults and their family members. The older adults ranged from 60 to 90 years old with a mean of 70.8 (SD = 8.9) years old. Slightly over half (56%) were women, 74% were married, 23% were widowed, 61% had an educational level between illiterate and elementary school, and 73% were either Buddhist or Taoist. In terms of self-reported health, 52% had average health, and 37% had bad or very bad health. The number of self-reported chronic conditions ranged from 1 to 7 (M = 2.03, SD = 1.24), with the top five most common chronic conditions: hypertension (29%), diabetes (27%), gastrointestinal complaints (21%), lung disease (19%), and pain (18%). For family members, ages ranged from 21 to 85 years (M = 38.8 years, SD = 12.6 years), 65% were women, 57% were married, 39% were single, 67% had an education beyond junior college, and 68% were Buddhist or Taoist. In terms of self-reported health, 38% were in average 263
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The Journal of Nursing Research
Lee-Jen W. Suen et al.
TABLE 1.
Demographic Characteristics (N = 95 Pairs) Older Adults Variable
%
n
Age (M T SD)
Family Members
70.8 T 8.9
# 2/t
%
n 38.8 T 12.6
t = 22.46* 2 2 = 0.54
Gender Male Female
42 53
44 56
33 62
35 65 22 = 16.52
Marital status Married Widowed Single Separated Education Illiterate to elementary Middle to high school Junior college and above Religion Buddhist or Taoist Catholic or Protestant Agnostic or Atheist Health Bad or very bad Average Good or excellent Chronic illness (M T SD)
70 22 3
74 23 3
54 2 37 2
57 2 39 2
58 24 13
61 25 14
7 24 64
8 25 67
22 = 72.66
22 = 291.6* 69 9 17
73 9 18
64 7 24
68 7 25 22 = 13.71
35 49 11
37 52 11
15 36 44
2.03 T 1.24
16 38 46 0.49 T 0.84
t = 12.76*
*p G .001.
condition, and 46% were in good or excellent condition. The number of self-reported chronic conditions ranged from 0 to 5 (M = 0.49, SD = 0.84), with 60% not reporting any chronic conditions. The top three most common chronic conditions were gastrointestinal complaints (20%), hypertension (5%), and rheumatoid arthritis (2%). Ten percent of the family members were spouses of the older adults, and 90% were children of the older adults. Because this study focused on older adultYfamily member pairs, we performed a paired t test and 2 2 (contingency table) to test the interpair differences and associations. A paired-sample t test found significant differences between older adults and their family members with regard to age (t = 22.46, p G .001) and number of chronic illnesses (t = 12.76, p G .001). The chisquared test found a significant association between older adults and their respective family members with respect to religion (2 2 = 291.6, p G .001) but no association with respect to gender, marital status, educational level, or selfreported health. That is, the older adult and his or her family member are likely to be of the same religion. Table 2 shows percentages of older adults and family members who had heard of the Palliative Ordinance, advance directives, and healthcare decision surrogate and their attitudes toward these healthcare regulations. Thirty-nine percent of older adults versus 67% of family members had heard of the Palliative Ordinance, and 35% of older adults
TABLE 2.
The Palliative Ordinance Familiarity of Older Adults and Their Family Members (N = 95 Pairs) Older Adults
Family Member
Variable
n
%
n
%
#2
Aware of palliative ordinance Importance of palliative ordinance Important No opinion Not important Aware of health living will
37
39
64
67
5.94 11.87*
33 58 4 44
35 61 4 46
54 38 3 73
57 40 3 77
43 45 7 16
45 47 7 17
64 27 4 49
67 28 4 52
Importance of health living will Important No opinion Not important Aware of health decision surrogate Importance of health decision surrogate Important No opinion Not important
2.42 10.43*
4.17 17.62**
38 52 5
40 55 5
56 34 5
*p G .05. **p G .01.
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59 36 5
Life-Sustaining Treatment Preferences
VOL. 21, NO. 4, DECEMBER 2013
versus 57% of family members felt that the Palliative Ordinance was important. Although writing a living will is not a common practice in Taiwan, 46% of older adults and 77% of family members had heard of it, with 45% of older adults and 67% of family members expressing having advance directives to be important. Seventeen percent of older adults and 52% of family members had heard of healthcare decision surrogate, and 40% of older adults and 59% of family members felt it important to have a healthcare decision surrogate. Chi-squared statistics were used to test associations between older adults and their respective family members with regard to these variables. Although no associations were found between older adults and their family members with regard to having heard of the Palliative Ordinance, advance directives, or healthcare decision surrogate, there were significant associations regarding their importance. In other words, both in the paired relationship tended to believe or disbelieve in the importance of these issues, but none of the older adults had completed an advance directive at the time of the study.
Life-Sustaining Treatment Preferences of Older Adults Table 3 presents the mean and standard deviation for lifesustaining treatment preferences of older adults and the preferences of the family members for the older adults for each condition. The four treatment options and eight health scenarios resulted in a total of 32 conditions (items). Table 3 lists the results of paired-sample t tests. For older adults, the average preference ranged from 1.72 to 3.53. Among the 32 items, 23 items (72%) fell within the range encompassed by ‘‘possibly not want’’ and ‘‘unsure’’ (scores = 2Y3). In general, the older adults revealed a low desire for lifesustaining treatment in most health scenarios. Of the 32 items, the most desirable condition was antibiotics for severe emphysema. Nine out of ten of the most desired treatment options were antibiotics and artificial nutrition, in the case of severe emphysema. CPR (six items) and surgery (four items) were among the top 10 least-desired life-sustaining treatment options in the situations of coma without or with
TABLE 3.
Life-Sustaining Treatment Preferences of Older Adults and Their Family Members Antibiotics Item
M
SD
Surgery M
SD
CPR M
SD
Artificial Nutrition M
SD
Severe cognitive impairment, physically unaffected Older adult preference Family member preference
3.21 3.64
1.29** 1.26
2.59 3.11
1.26** 2.25 1.36 2.95
1.28*** 1.50
2.95 3.51
1.45** 1.44
Constant shortness of breath, cognitively unaffected Older adult preference Family member preference
3.53 3.68
1.19 1.26
2.91 3.22
1.28 1.35
2.54 2.96
1.43* 1.52
3.09 3.61
1.42** 1.40
Coma with no chance of recovery Older adult preference Family member preference
2.55 3.05
1.38** 1.36
2.01 2.32
1.17* 1.26
1.78 2.21
1.15* 1.37
2.73 3.27
1.51** 1.59
Coma with a slightest chance of recovery Older adult preference Family member preference
2.63 3.28
1.37*** 1.29
2.15 2.65
1.23** 1.93 1.26 2.39
1.18** 1.36
2.84 3.53
1.46*** 1.45
Severe paralysis with no chance of recovery Older adult preference Family member preference
2.87 3.14
1.33 1.41
2.25 2.51
1.31 1.30
2.02 2.37
1.17* 1.38
2.94 3.34
1.41* 1.57
Severe paralysis with slightest chance of recovery Older adult preference Family member preference
2.91 3.38
1.26** 1.27
2.27 2.51
1.23 1.27
2.01 2.52
1.11** 1.34
2.93 3.48
1.42** 1.49
Terminal cancer without pain Older adult preference Family member preference
2.84 3.25
1.39* 1.40
1.78 1.89
1.09 1.13
1.79 1.76
1.17 1.13
2.77 3.26
1.51* 1.57
Terminal cancer with constant pain Older adult preference Family member preference
2.99 3.54
1.49** 1.37
1.81 1.78
1.15 1.22
1.72 1.78
1.16 1.22
2.67 3.31
1.54** 1.60
Note. On the 5-point Likert scale, 1 represents definitely do not want, and 5 represents definitely want. CPR = cardiopulmonary resuscitation. The * in the rows of older adults are the p values of paired-sample t test comparing the mean desirability between the preferences of the older adults and those of the family members regarding life-sustaining treatments. *p G .05. **p G .01. ***p G .001.
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slightest chance of recovery and terminal cancer with or without constant pain.
Family Members’ Preferences for Life-Sustaining Treatment for Their Loved Ones The preferences of family members for life-sustaining treatment for their loved ones ranged from 1.76 to 3.68. Among the 32 items, 18 items (56%) were between ‘‘unsure’’ to ‘‘possibly want’’ (scores = 3Y4). The family members expressed higher preferences for life-sustaining treatment for their loved ones than what the older adults wanted for themselves. The 10 most preferred treatment options were antibiotics and artificial nutrition in six health scenarios, with antibiotics for severe emphysema being the most desirable condition. Of the 10 least preferred life-sustaining treatment options, six involved CPR and four involved surgery in the conditions of coma without chance of recovery, severe paralysis without chance of recovery, and terminal cancer with or without constant pain. The study found that, for all 32 items, family members had higher preferences for life-sustaining treatment for older adults than what the older adults wished for themselves. Nevertheless, this difference was not statistically significant in nine conditions: antibiotics for severe emphysema and severe paralysis with no chance for recovery; surgery for severe emphysema, severe paralysis with no or slightest chance of recovery, terminal cancer with or without pain; and CPR for terminal cancer with or without pain. Among the 32 items, 23 (72%) items were statistically higher. This suggests that family members will advocate for life-sustaining treatments that exceed the desires of older adults. With regard to health conditions, severe cognitive functional impairment with physical health intact and severe shortness of breath with cognitive function intact were perceived as the most favorable health conditions for both older adults and their families and yielded stronger preferences for life-sustaining treatment as a result. In terms of the types of treatments, surgery and CPR were viewed as less desirable than antibiotics and artificial nutrition. The family members’ preference for antibiotics and artificial nutrition for their wards also significantly exceeded the older adults’ preferences.
Discussion This study compared the preferences of older adults and their family members with regard to life-sustaining treatment preferences for the former. Prognosis and state of consciousness seemed to be the most important factors affecting treatment decisions for both older adults and their family members. Terminal cancer, coma without or with slightest chance of recovery, or severe paralysis without chance of recovery yielded low preferences for life-sustaining treatment. These results are consistent with another study of elderly adults (Coppola et al., 1999) and a bioethical experiment study
Lee-Jen W. Suen et al.
(Feltz & Samayoa, 2012), in which the treatment desirability was also significantly higher for cognitively functional emphysema compared with other health scenarios. In the current study, however, severe cognitive impairment with no physical impairment was viewed less negatively than coma, paralysis, or terminal cancer. In terms of the type of treatment, this study found that surgery and CPR, the more invasive treatments, were less desirable in all health scenarios for both older adults and their family members. Although statistically significant, there were six items in which the mean scores were near or below 2.50 (1 represents definitely do not want and 5 represents definitely want) for both older adults and their family members. Treatments associated with all these items were either CPR or surgery, including CPR for coma with no chance of recovery, coma with slightest chance of recovery, severe paralysis with no chance of recovery, and severe paralysis with slightest chance of recovery and surgery for coma with no chance of recovery and coma with slightest chance of recovery. Although statistically significant, the disagreement between older adults and their family members with regard to CPR or surgery may not be serious. This study result is consistent with other studies (Tang, Liu, Lai, Liu, & Chen, 2005). On the other hand, this study group may have perceived antibiotics as primarily for symptom relief rather than life sustenance or perhaps as less invasive/painful. Food and drink are not only nutrients but also provide care, comfort, and social bonding in many cultures (Christie, 2003) including the Taiwanese culture. In this study, family members indicated preferences for treatment that were higher than the older adults did for themselves on all 32 items. Nearly three quarters of these items (23% or 72%) were significantly higher, and 14 (61%) of these were treatments that used antibiotics and artificial nutrition. This suggests that family members are especially likely to push for more treatment if it is relatively noninvasive. Forgoing artificial nutrition or hydration may be perceived as cruel to the dying person especially when life expectancy is uncertain, so artificial nutrition is considered more desirable. A study of end-of-life care of Taiwanese patients with terminal cancer reported that about 60% of patients and their families opted for intravenous nutrition (Tang et al., 2005). In a study by Coppola et al. (1999); however, artificial nutrition was the least desirable treatment in all health scenarios. Artificial nutrition near death or in a persistent vegetative state has been one of most controversial issues in life-prolonging treatments for many decades, and the debate is likely to continue in the future. In this study, no significant difference was found between family members and older adults with regard to antibiotics and surgery in cases of severe emphysema and severe paralysis without a chance of recovery and of surgery and CPR in terminal cancer with or without pain. These results agree with a previous study finding that surrogate preferences more accurately reflect the patients’ wish for invasive treatments in hopeless health conditions (Sulmasy et al., 1998). Both the patient and his or her family tend to forgo more invasive
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Life-Sustaining Treatment Preferences
treatments if there is no chance of recovery. One study found that caregivers define life-sustaining treatment as clinical improvement (Kuehlmeyer, Borasio, & Jox, 2012). In a medical crisis, family members will often disagree about what should be done for their loved ones, and until consensus is reached, they tend to proceed with aggressive treatments because withholding treatment may be interpreted as ‘‘causing’’ premature patient death (Long, 2005). Tang et al. (2005) found that higher percentages of family caregivers than patients with terminal cancer wanted to continue intervention in all eight life-sustaining treatments presented. Withholding or withdrawing life-sustaining treatments from a patient is a life-or-death decision, and there is no turning back once the patient is dead. Furthermore, withholding or withdrawing life-sustaining treatments may be interpreted negatively as ‘‘giving up,’’ ‘‘passive euthanasia,’’ ‘‘playing God,’’ ‘‘causing death,’’ or ‘‘destroying hope.’’ Family members who prefer to avoid prolonged treatment may be reluctant to admit their preference (Schenker et al., 2012) out of fear of being blamed for depriving their loved ones of life or of being accused of ‘‘wishing to escape the caregiver’s burden.’’ As a result, family members may opt for more aggressive treatments than they actually prefer. One study found that surrogates did not predict their patient’s preferences for life-sustaining treatments accurately because those predictions reflected their own wishes for the patients instead of the patients’ wishes (Marks & Arkes, 2008). This study compared the preferences for life-sustaining treatment of older adults with chronic illnesses against the preferences of their families by analyzing the data pairs. Other studies have similarly found that surrogate preferences often do not agree with those of the patient in healthcare decisions (Phipps et al., 2003; Pruchno, Lemay, Field, & Levinsky, 2005). This phenomenon may be attributed to surrogates failing to predict patient wishes or to surrogates acting in the best interest of patients despite patient preferences. Because of the use of a convenience sample, generalizability is the main limitation of this study. Those older adults and family members willing to discuss the ‘‘taboo issues’’ addressed in this study may hold different perspectives than the general population with regard to life-sustaining treatments. In addition, those who refused to participate in the study also refused to provide demographic information; thus, the differences between participants and nonparticipants cannot be determined. In this study, 90% of the family members were children whose decisions may be more heavily influenced by filial piety mores. If the primary caregiver is a sibling of a similar age, the preferences of life-sustaining intervention for the patient may differ from those presented in the study. Despite these limitations, this study provides real data showing that family members do prefer more lifesustaining treatments for their loved ones than what older adults want for themselves. As a result, overtreatment may override comfort and dignity at the end of life. In Taiwan, physicians rarely discuss life-prolonging treatments with their patients, preferring instead to discuss this
VOL. 21, NO. 4, DECEMBER 2013
issue with family members. However, the general lack of open discussion on life-sustaining treatments and end-of-life issues between patients and their families increase the difficulties faced by family members to accurately infer their older adult’s wishes. Recent advocates of patient autonomy have sought to remedy this by encouraging discussion of endof-life care well before the onset of terminal illness. Discussion and communication are necessary to help family members make these critical decisions and to prevent older adults from undergoing treatments they do not wish to receive.
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Kwok, T., Twinn, S., & Yan, E. (2007). The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. Journal of Advanced Nursing, 58(3), 256Y262. doi:10.1111/j.1365-2648.2007.04230.x Long, S. O. (2005). Deciding to treat or not to treat. In S. O. Long (Ed.), Final days (pp. 110Y147). Honolulu, HI: University of Hawaii. Marks, M. A. Z., & Arkes, H. R. (2008). Patient and surrogate disagreement in end-of-life decisions: Can surrogates accurately predict patients’ preferences? Medical Decision Making, 28(4), 524Y531. doi:10.1177/0272989X08315244
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維生處置之決定傾向
VOL. 21, NO. 4, DECEMBER 2013
台灣老人及其家人對維生處置的決定傾向 吳麗珍1* 李浩銑2 Diana Lynn Morris3 1
長榮大學護理學系所副教授 2柳營奇美醫院資深副院長 3 美國凱斯西儲大學護理學系副教授
背 景
在台灣，預立遺囑還不是非常普及。因此，對於病危老年患者是否進行維生處置，多 數是由其家人做決定。
目 的
比較老人本身及其家人對於老人在不同健康情境時的維生決定傾向。
方 法
採橫斷式比較描述性研究，研究對象包括95對社區老人及其家人。使用修改版的Life Support Preferences Questionnaire用以測量維生處置意願傾向，所得資料以paired-sample t-test進行分析。
結 果
在 8 種不同健康情況和 4 種不同維生處置中（共 32 項），這 32 項家人對於維生處置的意 願傾向 ，均高於老人對自己維生處置之意願傾向 ，有 23 項（72%）達統計顯著水準。
結 論 為了使家人的決定忠於老人本身之意願，彼此有必要針對病危時是否接受維生處置進 實務應用 行溝通。
關鍵詞：維生處置決定、老人、家人。
接受刊載：102年4月15日 *通訊作者地址：吳麗珍 71101台南市歸仁區長大路1號 電話：（06）2785123－3172 E-mail: [email protected]
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