O R I G I NA L A R T I C L E
Perspectives of Korean Patients, Families, Physicians and Nurses on Advance Directives Jia Lee1, PhD, RN, Ki Hyun Kim2, MA, RN 1
Assistant Professor, College of Nursing Science, Kyung Hee University, Seoul, Korea 2 Skill Manager, Nurse, St. Paul Hospital, Seoul, Korea
Purpose The purpose of this study was to explore the perspectives of lung cancer patients, their families, physicians and nurses on advance directives. Methods The study employed a comparative descriptive design. A total of 124 participants from six general hospitals in Seoul and metropolitan area participated in this study from January 1, 2009 to November 15, 2009. Face-to-face interviews were conducted using a structured questionnaire. Results The majority of participants were not aware of advance directives. Most participants desired the establishment of a reliable legal system and a specific legal protocol for the design and application of advance directives. The perspectives of patients, their families, physicians and nurses differed regarding end-of-life care decisions. The least preferred treatment by patients with lung cancer was intensive care, followed by cardiopulmonary resuscitation, tracheotomy and artificial ventilation, and radiotherapy. Conclusions There were many differences in the perspectives of patients, families, physicians and nurses on advance directives. End-of-life care decisions should take the wishes of patients into account, and that such decisions should therefore be made before the patients lose the capacity to make them. To make well-informed decisions regarding future care, patients and families must be fully educated about advance directives and expected outcomes. [Asian Nursing Research 2010;4(4):185–193] Key Words
advance directives, oncology
INTRODUCTION Advance directives provide opportunities to allow terminal patients to exercise autonomy and to advise their health care providers regarding end-of-life care choices before the patients lose the capacity to do so (Heo, 2009). In America, in response to increasing medical technology, aggressive medical intervention left over 1.4 million Americans remain so frail as to
survive only through the use of feeding tubes and as many as 30,000 persons were kept alive in comatose and permanently vegetative states (American Academy of Neurology, 1995; US Congress, 1987).As more and more persons experienced the burdens and diminishing benefits of aggressive medical treatment in poor prognosis states, pressure began to mount to devise ways to avoid the suffering and costs associated with treatments one did not want (Choice in Dying,
*Correspondence to: Ki Hyun Kim, MA, RN, St. Paul Hospital, 1 Jeonnong-dong, Dongdaemun-gu, Seoul 130-709, Korea. E-mail: [email protected] Received: April 13, 2010
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Revised: August 13, 2010
Accepted: November 18, 2010
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2007). Therefore, advance directives have been drawn from existing law and used in clinical fields. However, such directives are not commonly used in Asian countries, including Korea, although they are in wide use in Western countries (Heo, 2009). The Korean health care system and government have experienced cultural difficulties in designing legal regulations for advance directives (Kwon, 2009). In Korea end-of-life care decisions are normally made by the patient’s spouse and his or her eldest son (Kwon). It is typical for Korean family members to be reluctant to inform patients about the terminal nature of their illnesses, in the belief that such information may cause the patients to lose the hope and will to survive (S. M. Lee, 2009). Therefore, it is common for Korean family members to withhold information about negative disease progress, and to select aggressive treatments (Heo). In this context, the issue of patient autonomy, right to refuse treatment, individual decision making and family conflict regarding end-of-life care is often overlooked. Therefore, understanding the cultural beliefs and values of Korean patients with terminal illnesses and their families, and how these beliefs and values impact their reactions toward the concept of advance directives is essential before formulating regulations to govern the application of advance directives (Johnson, Kuchibhatla, & Tulsky, 2008). Cancer prevalence in Korea has doubled during the last 10 years, with one of every three Korean men, and one of every four Korean women, expected to be diagnosed with cancer during his or her lifetime (Korean Statistical Information Service, 2009). Lung cancer is the leading cause of cancer death in Korea, and its progression after diagnosis is typically very fast. Despite improved surgical techniques and the development of more effective therapeutic agents, the outcomes of lung cancer patients in Korea remain poor, with a 5-year relative survival rate of only 11.6% between 1997 and 2001 (Shim, 2009). Moreover, only 20% of lung cancer cases are early detected in Korea, reducing the possibility of curative resection (Seo, 2003). Therefore, it is important to identify the appropriate time for lung cancer patients and their families to make end-of-life care decisions. Because 186
patients and their families rely on health care providers to understand the disease status and to select the choices of treatment, it is also important to identify the perspectives of health care providers, in particular nurses who take care of patients and their families closely, on advance directives. However, there is lack of literature on nurses’ perceptions in Korea (Kim, Kang, Koh, & Koh, 2009; Kwon et al., 2010). In the study of attitudes and practices of critical care physicians in end-of-life decisions in intensive care units, there were significant differences in the attitudes and practices of critical care physicians in Korean ICUs concerning end-of-life care decisions and the withdrawing and withholding of life-sustaining treatment (Kim et al., 2009). Kwon et al. conducted a study of the attitudes of patients, family members and physicians toward the withdrawal of medical treatment for terminal patients. Physicians were skeptical of the authenticity of the decisions made by family members. Before conducting an advance directive, it is needed to fully understand a patient’s as well as associated individuals’ points of view. The purpose of this study was to identify the perspectives of lung cancer patients, their families, physicians and nurses regarding advance directives. Research questions are as below: (a) Are there any differences in perspectives of patients, their families, physicians and nurses on advance directives? (b) Are there any differences in perspectives of patients, their families, physicians and nurses regarding end-oflife care decisions?
Definition of terms Advance directives are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity, and appoints a person to make such decisions on their behalf (Dewar, 1994). End of life care decisions are decisions about the end of life concerning the type of medical care and the extend of that care that patient would like to receive (Pace, 2000). In this study end of life care decisions are preferences of participants concerning the type of treatments for the end stage of lung cancer. Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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METHODS Research design The study employed a comparative descriptive design. Because the advance directives were not well known, the face-to-face interview method using the structured questionnaire was conducted to increase comprehension in lung cancer patients, their families, physicians and nurses. Study participants Participants were recruited using convenience sampling from six general hospitals in Seoul and the Seoul metropolitan area. Inclusion criteria regarding lung cancer patients were: (a) persons diagnosed as stage IIIB or IV of lung cancer, (b) able to communicate, and (c) aged 18 years old or over. The necessary total sample size for the four study groups (lung cancer patients, their families, physicians and nurses) was calculated to be 122 by G Power sample size calculation program (Erdfelder, Faul, & Buchner, 1996) with an alpha value of .05, power of 80%, and medium effect size of 0.30 for chi-square tests. Study instruments Demographic characteristics included gender, age, education, religion, income, activities of daily living (ADL) as measured by Katz ADL (Katz, Downs, Cash, & Grotz, 1970) and comorbidity (number of disease). Kats ADL is a 6-item scale that assesses basic functions (bathing, dressing, toileting, transfers, continence, & feeding). A score of 6 indicates full independence, and 0, full dependence. Brorsson and Asberg (1984) reported a satisfactory coefficient of reliability of .74 to .88. Hamrin and Lindmark (1988) reported convergent validity as a high correlation of .95 between the Activity index and the Katz index. We developed a structured questionnaire with two subscales exploring the perspectives of participants regarding advance directives and end-of-life care, including questions taken or modified from a study on hospice patients (Sun et al., 2009), along with additional questions developed after a review of the literature. Content validity was measured by six experts about treatment of lung cancer including Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
physicians, nurses, and professors. Items rated under 4 (ranged from 1 = least relevant to 5 = most relevant) were deleted or modified. Questions About Advance Directives scale included seven statements intended to elicit information about participants’ perspectives regarding advance directives. All items are categorical scales having “Yes/No” questions or selecting the type of answer. Questions regarding End-of-life Care Decisions in Advance Directives scale included 11 statements exploring participants’ perspectives regarding end-of-life care decisions as the contents of advance directives. All items are categorical scales having “Yes/No” questions. Families, physicians, and nurses were interviewed with additional questions about what they would want the contents of advance directives to include if they were patients themselves. For instance, they were asked by “I want the patient to have painless care” as well as “If I were a patient, I want to have painless care.”
Data collection The six general hospitals located in Seoul and metropolitan areas were randomly selected from the hospital list from the Korean Hospital Association. The Kyung Hee University Institutional Review Board approved the study protocol. The study permission of each hospital administrator was also obtained. Patients’ lists and their health care providers’ lists were provided from each hospital unit. Research nurses approached patients and their families first and then their physicians and nurses. Informed consents were obtained after fully explained about the study. We interviewed 130 participants separately between January 1, 2009 to November 15, 2009 and analyzed data from 124 participants after excluding six incomplete interviews because the participants wanted to discontinue the interview (patient, n = 1; family, n = 1, and physician n = 4). Data analysis Statistical analysis with SPSS 14.0 (SPSS Inc., Chicago, IL, USA) was performed using Pearson chisquare or Fisher’s exact test to compare the responses of the four sample groups across categorical 187
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demographic variables. The a priori p value for statistical significance was .05. Meaningful statements were considered to understand clinical significance of the statistical results.
RESULTS Characteristics of participants Table 1 describes the characteristics of our study participants. There were higher percentages of men in the patient group (83.3%) and of women in the family group (63.3%). Approximately 63.4% of the patients were over 60 years old. Most of the patients (76.7%) were totally independent according to the Katz ADL scale. Perspectives on advance directives Perspectives of lung cancer patients, their families, physicians and nurses on advance directives are described in Table 2. There was no significant group difference in awareness of advance directives (p = .095). However, only 26.7% of patients and 33.3% of families were aware of advance directives. Physicians (40%) and nurses (55.9%) were even less likely to be familiar with advance directives. Most participants stated that they would prefer for patients and families to work together to execute advance directives. In response to the question, “If families execute advance directives, which family member do you prefer to execute them,” the patient’s spouse was the most preferred, followed by his or her son first and then the daughter. There were significant group differences in selecting a family executor (p = .004). Less than half of patients and their families (42.3%, 38.5%, respectively) preferred his or her spouse the most for an executor while did most of physicians and nurses preferred the spouse as the executor more than patients or families (70.4%, 60.7%, respectively). Patients preferred that advance directives be executed at the time of end stage or metastasis of cancer (53.3%), while families preferred the time of first admission for cancer treatment (33.3%), or the time of end stage or metastasis of cancer (33.3%). 188
Perspectives regarding end-of-life care decisions There were significant group differences in perspectives regarding end of life care decisions including intensive care unit (ICU) treatment (p = .017), oxygen therapy (p < .001), central lines (p < .001), tube feeding (p < .001), indwelling catheterization (p < .001) and antibiotics (p < .001) (Table 3). Only 3.3% of patients preferred to transfer to ICU for aggressive end-of-life care “if the patient relapsed into a coma,” while 33.3% of families, 26.7% of physicians, and 14.7% of nurses preferred to transfer such patients to the ICU. Interestingly, only 3.3% of physicians, 8.8% of nurses, and 20.0% of families agreed to transfer to the ICU “if I relapsed into a coma.” Only 13.3% of patients wanted to receive cardiopulmonary resuscitation (CPR) in end-of-life contexts, while 36.7% families, 36.7% physicians, and 17.6% nurses wanted terminal patients to receive CPR. When placed in the patient’s situation, none of the physicians, only 5.9% of nurses, and 23.3% families wanted to receive CPR. Participants also showed different perspectives toward the use of tracheotomies and artificial ventilation. The least preferred treatment by patients with lung cancer was ICU treatment (3.3%), followed by cardiopulmonary resuscitation (13.3%), tracheotomy and artificial ventilation (20.0%), and radiotherapy (26.7%), while the other participants preferred these items for the patients. However, in the cases of if families were patients, families did not want ICU treatment, CPR, chemotherapy and radiotherapy.
DISCUSSION It is likely that a legal framework governing advance directives will eventually be implemented in Korea. Before the development and application of such a system, it is critical to identify patients’ beliefs and values regarding end-of-life care. The study found that terminally ill patients, their families, physicians, and nurses had lack of knowledge about advance directives and expressed different perspectives about endof-life care decisions. A study of focus group including health care providers also found that there was a lack of formal regulations or common education about Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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Table 1 Characteristics of Participants Patients (n = 30) n (%)
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
Gender Female Male
5 (16.7) 25 (83.3)
19 (63.3) 11 (36.7)
16 (53.3) 14 (46.7)
34 (100.0) 0 (0)
Age (yr) ≤ 30 31–40 41–50 51–60 61–70 ≥ 71
0 (0) 0 (0) 6 (20.0) 5 (16.6) 11 (36.7) 8 (26.7)
6 (20.0) 6 (20.0) 8 (26.7) 5 (16.7) 5 (16.7) 0 (0)
6 (20.0) 24 (80.0) 0 (0) 0 (0) 0 (0) 0 (0)
20 (58.8) 12 (35.3) 1 ( 2.9) 1 ( 2.9) 0 (0) 0 (0)
Education Elementary Middle school High school University Graduate
11 (36.7) 5 (16.7) 9 (30.0) 5 (16.7) 0 (0)
3 (10.0) 2 (6.7) 12 (40.0) 11 (36.7) 2 (6.7)
0 (0) 0 (0) 0 (0) 0 (0) 30 (100)
0 (0) 0 (0) 0 (0) 26 (76.5) 8 (23.5)
Religion Roman Catholic Protestantism Buddhism None
6 (20.0) 7 (23.3) 4 (13.3) 13 (43.3)
6 (20.0) 9 (30.0) 4 (13.3) 11 (36.7)
6 (20.0) 8 (26.7) 5 (16.7) 11 (36.7)
11 (32.4) 10 (29.4) 4 (11.8) 9 (26.5)
Monthly income ($) None 1–1,500 1,510–3,000 3,010–4,500 ≥ 4,510
17 (56.7) 12 (40.0) 0 (0) 1 (3.3) 0 (0)
10 (33.3) 12 (40.0) 7 (23.3) 1 (3.3) 0 (0)
–
–
Activities of daily living Totally independent Partially dependent Dependent Totally dependent
23 (76.7) 1 (3.3) 5 (16.7) 1 (3.3)
25 (83.3) 5 (16.7) 0 (0) 0 (0)
–
–
Other disease None Respiratory Circulatory Gastrointestinal Kidney
10 (33.4) 5 (16.7) 12 (40.0) 1 (3.3) 2 (6.7)
19 (63.4) 2 (6.7) 5 (16.7) 2 ( 6.7) 2 ( 6.7)
–
–
–
9 (30.0) 11 (36.7)
–
–
Variables
Relationship Son Daughter
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Table 1 Continued Variables
Patients (n = 30) n (%)
Relationship (Contd) Spouse Relative Clinical experience (yr) 1–5 6–10 ≥ 11 Lung cancer in family
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
8 (26.7) 2 ( 6.7) –
–
7 (23.3) 12 (40.0) 11 (36.7)
19 (55.9) 7 (20.6) 8 (23.5)
–
–
4 (13.3)
8 (23.5)
Table 2 Perspectives on Advance Directives Patients (n = 30) n (%)
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
χ2/z
p
8 (26.7)
10 (33.3)
12 (40.0)
19 (55.9)
1.31
.095
27 (90.0)
29 (96.7)
26 (86.7)
34 (100.0)
5.81
.121
Person preferred to execute advance directives Patient Family Both patient and family Medical team
8 (26.7) 3 (10.0) 19 (63.3) 0 (0)
4 (13.3) 5 (16.7) 20 (66.7) 1 (3.3)
11 (36.7) 0 (0) 19 (63.3) 0 (0)
9 (26.5) 0 (0) 25 (73.5) 0 (0)
1.54a
.062
Person preferred to execute advance directives, if family executes Spouse Son Daughter Parents Others
11 (42.3) 10 (38.5) 3 (11.5) 0 (0) 2 ( 7.7)
10 (38.5) 7 (26.9) 2 (7.7) 0 (0) 7 (26.9)
19 (70.4) 3 (11.1) 1 ( 3.7) 2 (7.4) 2 (7.4)
17 (60.7) 1 (3.6) 0 (0) 4 (14.3) 6 (21.4)
2.65a
.004
Time preferred to execute advance directives When cancer was diagnosed First admission for cancer treatment End stage or metastasis Terminal stage
4 (13.3) 6 (20.0) 16 (53.3) 4 (13.3)
3 (10.0) 10 (33.3) 10 (33.3) 7 (23.3)
4 (13.3) 0 (0) 18 (60.0) 8 (26.7)
4 (11.8) 6 (17.6) 20 (58.8) 4 (11.8)
1.36a
.087
Need of legal form for advance directives
28 (93.3)
27 (90.0)
29 (96.7)
32 (94.1)
1.13
.770
Need of legal system for advance directives
29 (96.7)
27 (90.0)
26 (86.7)
34 (100.0)
5.81
.121
Statements
Recognition of advance directives Need of education for the way to use advance directives
Note. az score.
190
Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4 8 (26.7)
12 (40.0)
15 (50.0)
12 (40.0)
12 (40.0)
14 (46.7)
6 (20.0)
17 (56.7)
4 (13.3)
1 (3.3)
30 (100.0)
Patients (n = 30) n (%)
Note. ICU = intensive care unit; CPR = cardiopulmonary resuscitation; IV = intravenous. az score.
I want the patient to have painless care If I were a patient, I want to have painless care If patient relapsed into a coma, I want patient to live in the ICU If I relapsed into a coma, I want to live in the ICU I want patient to have CPR If I were a patient, I want to have CPR I want patient to have oxygen therapy If I were a patient, I want to have oxygen therapy I want patient to have tracheotomy and ventilator If I were a patient, I want to have tracheotomy and ventilator I want patient to have central IV line If I were a patient, I want to have central IV line I want patient to have tube feeding If I were a patient, I want to have tube feeding I want patient to have indwelling catheterization If I were a patient, I want to have indwelling catheterization I want patient to have antibiotics If I were a patient, I want to have antibiotics I want patient to have chemotherapy If I were a patient, I want to have chemotherapy I want patient to have radiotherapy If I were a patient, I want to have radiotherapy
Statements
30 (100.0) 30 (100.0) 10 (33.3) 6 (20.0) 11 (36.7) 7 (23.3) 25 (83.3) 19 (63.3) 13 (43.3) 10 (33.3) 17 (56.7) 13 (43.3) 16 (53.3) 11 (36.7) 18 (60.0) 15 (50.0) 20 (66.7) 16 (53.3) 15 (50.0) 5 (16.7) 13 (43.3) 5 (16.7)
Family (n = 30) n (%) 30 (100.0) 30 (100.0) 8 (26.7) 1 (3.3) 11 (36.7) 0 (0) 28 (93.3) 24 (80.0) 14 (46.7) 5 (16.7) 25 (83.3) 17 (56.7) 27 (90.0) 18 (60.0) 27 (90.0) 16 (53.3) 28 (93.3) 25 (73.5) 13 (43.3) 13 (38.2) 12 (40.0) 10 (29.4)
Physicians (n = 30) n (%)
Different Perspectives Regarding End-of-life Care Decisions in Advance Directives
Table 3
34 (100.0) 34 (100.0) 5 (14.7) 3 (8.8) 6 (17.6) 2 (5.9) 32 (94.1) 29 (85.3) 11 (32.4) 6 (17.6) 28 (82.4) 22 (64.7) 29 (85.3) 22 (64.7) 29 (85.3) 22 (64.7) 29 (85.3) 14 (46.7) 19 (55.9) 12 (40.0) 14 (41.2) 11 (36.7)
Nurses (n = 34) n (%)
– – 2.12a 1.27a 1.54a 2.51a 19.29 4.57 5.73 3.08 14.44 2.98 25.01 5.63 23.48 1.57 17.99 5.22 1.92 4.74 2.20 3.08
χ2/z
– – .017 .102 .062 .006 < .001 .103 .125 .215 .002 .226 < .001 .060 < .001 .457 < .001 .073 .590 .094 .533 .214
p
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advance directives (J. A. Lee, 2009). Most patients wanted their advance directives to dictate that they would not receive ICU care, CPR, tracheotomies and artificial ventilation, or radiotherapy, while their families wanted them to receive more aggressive care. However, when family members were asked to place themselves in the patient’s situation, most did not want such aggressive therapies. A study by Kwon et al. (2010) showed consistent findings that 89.9% of patients did not want to receive aggressive treatments while 62% of their families did. Physicians and nurses also had different perceptions of what should be done for patient versus themselves. It may be due to the generation gap or lack of educational preparation for end-of-life. A study of 88 critical care physicians found significant differences even among physicians in the attitudes and practices concerning end-of-life care decisions and the withdrawing and withholding of life-sustaining treatment (Kim et al., 2009). Because there are not any other studies about different perceptions between physicians and nurses in Korea, further studies are needed. As the wishes of family members often differ from those of patients, it is even more important for advance directives to include input from the patients themselves, and to be drawn up before patients lose the capacity to provide that input. However, medical decision-making is influenced by a variety of factors, including cultural norms, regional practices, patient values, physician responsibilities and patient autonomy (S. M. Lee, 2009).The investigators also captured meaningful statements regarding advance directives from participants during the interviews as following. In Korea, the strong filial bonds between parents and children must be considered before applying advance directives based on the statement of one patient who proudly stated, “My son will not leave me to die. He will do everything for me, even against my will.” A previous study conducted in Taiwan also detected similar perspectives among patients, families and healthcare providers (Tang, Liu, Lai, Liu, & Chen, 2005). Patient autonomy is frequently subordinated to the wishes of family members, leading to disagreements between patients, family, and physicians about end-of-life care (Tang et al., 2005). Terminally-ill 192
Japanese patients also rely on family members and physicians for making end-of-life care decisions (Kinoshita, 2007). These cultural characteristics that are common in Asian countries may result in the patient’s advance directive preferences being overridden. Current Korean medical law does not include categories for end-of-life care, but the law governing emergency medical care states that “physicians are not allowed to discontinue emergency care without appropriate reasons,” per Article 10, Chapter 3 (The National Assembly of the Republic of Korea, 2009). Therefore, if patients are transferred to the ICU while unconscious, they must be kept on ventilators until death, brain death, or judicial decision from a court of law (Y. S. Lee, 2009). These days, the voices of physicians as well as patients are rising to demand an advance directive system, meant to protect patients’ rights of self-determination. However, great challenges remain in terms of educating patients, families, and healthcare providers to better provide optimal end-of-life care. To make well-informed decisions for future care, patients and families should be fully educated about each possible form of care and expected outcomes. Educational programs should be developed to help patients and providers understand the issues relevant to decision-making in end-of-life care, and to improve client-provider communication. This study has limitations that should be considered in the interpretation of the results. Regional variations could not be addressed because this study was conducted at six general hospitals located in Seoul and metropolitan area and, thus, generalizability is limited. The sample included patients in the end stage of lung cancer. Patients with severe cognitive impairment were excluded. Therefore, study results can only be generalized to these types of patients.
CONCLUSION The study findings provide that the fundamental evidence necessary for developing advance directive regulations in Korea that there were many differences in perspectives of lung cancer patients, their families, physicians and nurses. As the wishes of family Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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members often differ from those of patients, Korean health policy makers should consider that end-of-life care decisions should take the wishes of patients into account, and that such decisions should be made before the patients lose the capacity to make them. To make well-informed decisions regarding future care, Korean patients and families must be fully educated about advance directives and expected outcomes.
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Perspectives of Korean Patients, Families, Physicians and Nurses on Advance Directives Jia Lee1, PhD, RN, Ki Hyun Kim2, MA, RN 1
Assistant Professor, College of Nursing Science, Kyung Hee University, Seoul, Korea 2 Skill Manager, Nurse, St. Paul Hospital, Seoul, Korea
Purpose The purpose of this study was to explore the perspectives of lung cancer patients, their families, physicians and nurses on advance directives. Methods The study employed a comparative descriptive design. A total of 124 participants from six general hospitals in Seoul and metropolitan area participated in this study from January 1, 2009 to November 15, 2009. Face-to-face interviews were conducted using a structured questionnaire. Results The majority of participants were not aware of advance directives. Most participants desired the establishment of a reliable legal system and a specific legal protocol for the design and application of advance directives. The perspectives of patients, their families, physicians and nurses differed regarding end-of-life care decisions. The least preferred treatment by patients with lung cancer was intensive care, followed by cardiopulmonary resuscitation, tracheotomy and artificial ventilation, and radiotherapy. Conclusions There were many differences in the perspectives of patients, families, physicians and nurses on advance directives. End-of-life care decisions should take the wishes of patients into account, and that such decisions should therefore be made before the patients lose the capacity to make them. To make well-informed decisions regarding future care, patients and families must be fully educated about advance directives and expected outcomes. [Asian Nursing Research 2010;4(4):185–193] Key Words
advance directives, oncology
INTRODUCTION Advance directives provide opportunities to allow terminal patients to exercise autonomy and to advise their health care providers regarding end-of-life care choices before the patients lose the capacity to do so (Heo, 2009). In America, in response to increasing medical technology, aggressive medical intervention left over 1.4 million Americans remain so frail as to
survive only through the use of feeding tubes and as many as 30,000 persons were kept alive in comatose and permanently vegetative states (American Academy of Neurology, 1995; US Congress, 1987).As more and more persons experienced the burdens and diminishing benefits of aggressive medical treatment in poor prognosis states, pressure began to mount to devise ways to avoid the suffering and costs associated with treatments one did not want (Choice in Dying,
*Correspondence to: Ki Hyun Kim, MA, RN, St. Paul Hospital, 1 Jeonnong-dong, Dongdaemun-gu, Seoul 130-709, Korea. E-mail: [email protected] Received: April 13, 2010
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Revised: August 13, 2010
Accepted: November 18, 2010
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2007). Therefore, advance directives have been drawn from existing law and used in clinical fields. However, such directives are not commonly used in Asian countries, including Korea, although they are in wide use in Western countries (Heo, 2009). The Korean health care system and government have experienced cultural difficulties in designing legal regulations for advance directives (Kwon, 2009). In Korea end-of-life care decisions are normally made by the patient’s spouse and his or her eldest son (Kwon). It is typical for Korean family members to be reluctant to inform patients about the terminal nature of their illnesses, in the belief that such information may cause the patients to lose the hope and will to survive (S. M. Lee, 2009). Therefore, it is common for Korean family members to withhold information about negative disease progress, and to select aggressive treatments (Heo). In this context, the issue of patient autonomy, right to refuse treatment, individual decision making and family conflict regarding end-of-life care is often overlooked. Therefore, understanding the cultural beliefs and values of Korean patients with terminal illnesses and their families, and how these beliefs and values impact their reactions toward the concept of advance directives is essential before formulating regulations to govern the application of advance directives (Johnson, Kuchibhatla, & Tulsky, 2008). Cancer prevalence in Korea has doubled during the last 10 years, with one of every three Korean men, and one of every four Korean women, expected to be diagnosed with cancer during his or her lifetime (Korean Statistical Information Service, 2009). Lung cancer is the leading cause of cancer death in Korea, and its progression after diagnosis is typically very fast. Despite improved surgical techniques and the development of more effective therapeutic agents, the outcomes of lung cancer patients in Korea remain poor, with a 5-year relative survival rate of only 11.6% between 1997 and 2001 (Shim, 2009). Moreover, only 20% of lung cancer cases are early detected in Korea, reducing the possibility of curative resection (Seo, 2003). Therefore, it is important to identify the appropriate time for lung cancer patients and their families to make end-of-life care decisions. Because 186
patients and their families rely on health care providers to understand the disease status and to select the choices of treatment, it is also important to identify the perspectives of health care providers, in particular nurses who take care of patients and their families closely, on advance directives. However, there is lack of literature on nurses’ perceptions in Korea (Kim, Kang, Koh, & Koh, 2009; Kwon et al., 2010). In the study of attitudes and practices of critical care physicians in end-of-life decisions in intensive care units, there were significant differences in the attitudes and practices of critical care physicians in Korean ICUs concerning end-of-life care decisions and the withdrawing and withholding of life-sustaining treatment (Kim et al., 2009). Kwon et al. conducted a study of the attitudes of patients, family members and physicians toward the withdrawal of medical treatment for terminal patients. Physicians were skeptical of the authenticity of the decisions made by family members. Before conducting an advance directive, it is needed to fully understand a patient’s as well as associated individuals’ points of view. The purpose of this study was to identify the perspectives of lung cancer patients, their families, physicians and nurses regarding advance directives. Research questions are as below: (a) Are there any differences in perspectives of patients, their families, physicians and nurses on advance directives? (b) Are there any differences in perspectives of patients, their families, physicians and nurses regarding end-oflife care decisions?
Definition of terms Advance directives are instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity, and appoints a person to make such decisions on their behalf (Dewar, 1994). End of life care decisions are decisions about the end of life concerning the type of medical care and the extend of that care that patient would like to receive (Pace, 2000). In this study end of life care decisions are preferences of participants concerning the type of treatments for the end stage of lung cancer. Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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METHODS Research design The study employed a comparative descriptive design. Because the advance directives were not well known, the face-to-face interview method using the structured questionnaire was conducted to increase comprehension in lung cancer patients, their families, physicians and nurses. Study participants Participants were recruited using convenience sampling from six general hospitals in Seoul and the Seoul metropolitan area. Inclusion criteria regarding lung cancer patients were: (a) persons diagnosed as stage IIIB or IV of lung cancer, (b) able to communicate, and (c) aged 18 years old or over. The necessary total sample size for the four study groups (lung cancer patients, their families, physicians and nurses) was calculated to be 122 by G Power sample size calculation program (Erdfelder, Faul, & Buchner, 1996) with an alpha value of .05, power of 80%, and medium effect size of 0.30 for chi-square tests. Study instruments Demographic characteristics included gender, age, education, religion, income, activities of daily living (ADL) as measured by Katz ADL (Katz, Downs, Cash, & Grotz, 1970) and comorbidity (number of disease). Kats ADL is a 6-item scale that assesses basic functions (bathing, dressing, toileting, transfers, continence, & feeding). A score of 6 indicates full independence, and 0, full dependence. Brorsson and Asberg (1984) reported a satisfactory coefficient of reliability of .74 to .88. Hamrin and Lindmark (1988) reported convergent validity as a high correlation of .95 between the Activity index and the Katz index. We developed a structured questionnaire with two subscales exploring the perspectives of participants regarding advance directives and end-of-life care, including questions taken or modified from a study on hospice patients (Sun et al., 2009), along with additional questions developed after a review of the literature. Content validity was measured by six experts about treatment of lung cancer including Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
physicians, nurses, and professors. Items rated under 4 (ranged from 1 = least relevant to 5 = most relevant) were deleted or modified. Questions About Advance Directives scale included seven statements intended to elicit information about participants’ perspectives regarding advance directives. All items are categorical scales having “Yes/No” questions or selecting the type of answer. Questions regarding End-of-life Care Decisions in Advance Directives scale included 11 statements exploring participants’ perspectives regarding end-of-life care decisions as the contents of advance directives. All items are categorical scales having “Yes/No” questions. Families, physicians, and nurses were interviewed with additional questions about what they would want the contents of advance directives to include if they were patients themselves. For instance, they were asked by “I want the patient to have painless care” as well as “If I were a patient, I want to have painless care.”
Data collection The six general hospitals located in Seoul and metropolitan areas were randomly selected from the hospital list from the Korean Hospital Association. The Kyung Hee University Institutional Review Board approved the study protocol. The study permission of each hospital administrator was also obtained. Patients’ lists and their health care providers’ lists were provided from each hospital unit. Research nurses approached patients and their families first and then their physicians and nurses. Informed consents were obtained after fully explained about the study. We interviewed 130 participants separately between January 1, 2009 to November 15, 2009 and analyzed data from 124 participants after excluding six incomplete interviews because the participants wanted to discontinue the interview (patient, n = 1; family, n = 1, and physician n = 4). Data analysis Statistical analysis with SPSS 14.0 (SPSS Inc., Chicago, IL, USA) was performed using Pearson chisquare or Fisher’s exact test to compare the responses of the four sample groups across categorical 187
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demographic variables. The a priori p value for statistical significance was .05. Meaningful statements were considered to understand clinical significance of the statistical results.
RESULTS Characteristics of participants Table 1 describes the characteristics of our study participants. There were higher percentages of men in the patient group (83.3%) and of women in the family group (63.3%). Approximately 63.4% of the patients were over 60 years old. Most of the patients (76.7%) were totally independent according to the Katz ADL scale. Perspectives on advance directives Perspectives of lung cancer patients, their families, physicians and nurses on advance directives are described in Table 2. There was no significant group difference in awareness of advance directives (p = .095). However, only 26.7% of patients and 33.3% of families were aware of advance directives. Physicians (40%) and nurses (55.9%) were even less likely to be familiar with advance directives. Most participants stated that they would prefer for patients and families to work together to execute advance directives. In response to the question, “If families execute advance directives, which family member do you prefer to execute them,” the patient’s spouse was the most preferred, followed by his or her son first and then the daughter. There were significant group differences in selecting a family executor (p = .004). Less than half of patients and their families (42.3%, 38.5%, respectively) preferred his or her spouse the most for an executor while did most of physicians and nurses preferred the spouse as the executor more than patients or families (70.4%, 60.7%, respectively). Patients preferred that advance directives be executed at the time of end stage or metastasis of cancer (53.3%), while families preferred the time of first admission for cancer treatment (33.3%), or the time of end stage or metastasis of cancer (33.3%). 188
Perspectives regarding end-of-life care decisions There were significant group differences in perspectives regarding end of life care decisions including intensive care unit (ICU) treatment (p = .017), oxygen therapy (p < .001), central lines (p < .001), tube feeding (p < .001), indwelling catheterization (p < .001) and antibiotics (p < .001) (Table 3). Only 3.3% of patients preferred to transfer to ICU for aggressive end-of-life care “if the patient relapsed into a coma,” while 33.3% of families, 26.7% of physicians, and 14.7% of nurses preferred to transfer such patients to the ICU. Interestingly, only 3.3% of physicians, 8.8% of nurses, and 20.0% of families agreed to transfer to the ICU “if I relapsed into a coma.” Only 13.3% of patients wanted to receive cardiopulmonary resuscitation (CPR) in end-of-life contexts, while 36.7% families, 36.7% physicians, and 17.6% nurses wanted terminal patients to receive CPR. When placed in the patient’s situation, none of the physicians, only 5.9% of nurses, and 23.3% families wanted to receive CPR. Participants also showed different perspectives toward the use of tracheotomies and artificial ventilation. The least preferred treatment by patients with lung cancer was ICU treatment (3.3%), followed by cardiopulmonary resuscitation (13.3%), tracheotomy and artificial ventilation (20.0%), and radiotherapy (26.7%), while the other participants preferred these items for the patients. However, in the cases of if families were patients, families did not want ICU treatment, CPR, chemotherapy and radiotherapy.
DISCUSSION It is likely that a legal framework governing advance directives will eventually be implemented in Korea. Before the development and application of such a system, it is critical to identify patients’ beliefs and values regarding end-of-life care. The study found that terminally ill patients, their families, physicians, and nurses had lack of knowledge about advance directives and expressed different perspectives about endof-life care decisions. A study of focus group including health care providers also found that there was a lack of formal regulations or common education about Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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Table 1 Characteristics of Participants Patients (n = 30) n (%)
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
Gender Female Male
5 (16.7) 25 (83.3)
19 (63.3) 11 (36.7)
16 (53.3) 14 (46.7)
34 (100.0) 0 (0)
Age (yr) ≤ 30 31–40 41–50 51–60 61–70 ≥ 71
0 (0) 0 (0) 6 (20.0) 5 (16.6) 11 (36.7) 8 (26.7)
6 (20.0) 6 (20.0) 8 (26.7) 5 (16.7) 5 (16.7) 0 (0)
6 (20.0) 24 (80.0) 0 (0) 0 (0) 0 (0) 0 (0)
20 (58.8) 12 (35.3) 1 ( 2.9) 1 ( 2.9) 0 (0) 0 (0)
Education Elementary Middle school High school University Graduate
11 (36.7) 5 (16.7) 9 (30.0) 5 (16.7) 0 (0)
3 (10.0) 2 (6.7) 12 (40.0) 11 (36.7) 2 (6.7)
0 (0) 0 (0) 0 (0) 0 (0) 30 (100)
0 (0) 0 (0) 0 (0) 26 (76.5) 8 (23.5)
Religion Roman Catholic Protestantism Buddhism None
6 (20.0) 7 (23.3) 4 (13.3) 13 (43.3)
6 (20.0) 9 (30.0) 4 (13.3) 11 (36.7)
6 (20.0) 8 (26.7) 5 (16.7) 11 (36.7)
11 (32.4) 10 (29.4) 4 (11.8) 9 (26.5)
Monthly income ($) None 1–1,500 1,510–3,000 3,010–4,500 ≥ 4,510
17 (56.7) 12 (40.0) 0 (0) 1 (3.3) 0 (0)
10 (33.3) 12 (40.0) 7 (23.3) 1 (3.3) 0 (0)
–
–
Activities of daily living Totally independent Partially dependent Dependent Totally dependent
23 (76.7) 1 (3.3) 5 (16.7) 1 (3.3)
25 (83.3) 5 (16.7) 0 (0) 0 (0)
–
–
Other disease None Respiratory Circulatory Gastrointestinal Kidney
10 (33.4) 5 (16.7) 12 (40.0) 1 (3.3) 2 (6.7)
19 (63.4) 2 (6.7) 5 (16.7) 2 ( 6.7) 2 ( 6.7)
–
–
–
9 (30.0) 11 (36.7)
–
–
Variables
Relationship Son Daughter
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Table 1 Continued Variables
Patients (n = 30) n (%)
Relationship (Contd) Spouse Relative Clinical experience (yr) 1–5 6–10 ≥ 11 Lung cancer in family
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
8 (26.7) 2 ( 6.7) –
–
7 (23.3) 12 (40.0) 11 (36.7)
19 (55.9) 7 (20.6) 8 (23.5)
–
–
4 (13.3)
8 (23.5)
Table 2 Perspectives on Advance Directives Patients (n = 30) n (%)
Family (n = 30) n (%)
Physicians (n = 30) n (%)
Nurses (n = 34) n (%)
χ2/z
p
8 (26.7)
10 (33.3)
12 (40.0)
19 (55.9)
1.31
.095
27 (90.0)
29 (96.7)
26 (86.7)
34 (100.0)
5.81
.121
Person preferred to execute advance directives Patient Family Both patient and family Medical team
8 (26.7) 3 (10.0) 19 (63.3) 0 (0)
4 (13.3) 5 (16.7) 20 (66.7) 1 (3.3)
11 (36.7) 0 (0) 19 (63.3) 0 (0)
9 (26.5) 0 (0) 25 (73.5) 0 (0)
1.54a
.062
Person preferred to execute advance directives, if family executes Spouse Son Daughter Parents Others
11 (42.3) 10 (38.5) 3 (11.5) 0 (0) 2 ( 7.7)
10 (38.5) 7 (26.9) 2 (7.7) 0 (0) 7 (26.9)
19 (70.4) 3 (11.1) 1 ( 3.7) 2 (7.4) 2 (7.4)
17 (60.7) 1 (3.6) 0 (0) 4 (14.3) 6 (21.4)
2.65a
.004
Time preferred to execute advance directives When cancer was diagnosed First admission for cancer treatment End stage or metastasis Terminal stage
4 (13.3) 6 (20.0) 16 (53.3) 4 (13.3)
3 (10.0) 10 (33.3) 10 (33.3) 7 (23.3)
4 (13.3) 0 (0) 18 (60.0) 8 (26.7)
4 (11.8) 6 (17.6) 20 (58.8) 4 (11.8)
1.36a
.087
Need of legal form for advance directives
28 (93.3)
27 (90.0)
29 (96.7)
32 (94.1)
1.13
.770
Need of legal system for advance directives
29 (96.7)
27 (90.0)
26 (86.7)
34 (100.0)
5.81
.121
Statements
Recognition of advance directives Need of education for the way to use advance directives
Note. az score.
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Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4 8 (26.7)
12 (40.0)
15 (50.0)
12 (40.0)
12 (40.0)
14 (46.7)
6 (20.0)
17 (56.7)
4 (13.3)
1 (3.3)
30 (100.0)
Patients (n = 30) n (%)
Note. ICU = intensive care unit; CPR = cardiopulmonary resuscitation; IV = intravenous. az score.
I want the patient to have painless care If I were a patient, I want to have painless care If patient relapsed into a coma, I want patient to live in the ICU If I relapsed into a coma, I want to live in the ICU I want patient to have CPR If I were a patient, I want to have CPR I want patient to have oxygen therapy If I were a patient, I want to have oxygen therapy I want patient to have tracheotomy and ventilator If I were a patient, I want to have tracheotomy and ventilator I want patient to have central IV line If I were a patient, I want to have central IV line I want patient to have tube feeding If I were a patient, I want to have tube feeding I want patient to have indwelling catheterization If I were a patient, I want to have indwelling catheterization I want patient to have antibiotics If I were a patient, I want to have antibiotics I want patient to have chemotherapy If I were a patient, I want to have chemotherapy I want patient to have radiotherapy If I were a patient, I want to have radiotherapy
Statements
30 (100.0) 30 (100.0) 10 (33.3) 6 (20.0) 11 (36.7) 7 (23.3) 25 (83.3) 19 (63.3) 13 (43.3) 10 (33.3) 17 (56.7) 13 (43.3) 16 (53.3) 11 (36.7) 18 (60.0) 15 (50.0) 20 (66.7) 16 (53.3) 15 (50.0) 5 (16.7) 13 (43.3) 5 (16.7)
Family (n = 30) n (%) 30 (100.0) 30 (100.0) 8 (26.7) 1 (3.3) 11 (36.7) 0 (0) 28 (93.3) 24 (80.0) 14 (46.7) 5 (16.7) 25 (83.3) 17 (56.7) 27 (90.0) 18 (60.0) 27 (90.0) 16 (53.3) 28 (93.3) 25 (73.5) 13 (43.3) 13 (38.2) 12 (40.0) 10 (29.4)
Physicians (n = 30) n (%)
Different Perspectives Regarding End-of-life Care Decisions in Advance Directives
Table 3
34 (100.0) 34 (100.0) 5 (14.7) 3 (8.8) 6 (17.6) 2 (5.9) 32 (94.1) 29 (85.3) 11 (32.4) 6 (17.6) 28 (82.4) 22 (64.7) 29 (85.3) 22 (64.7) 29 (85.3) 22 (64.7) 29 (85.3) 14 (46.7) 19 (55.9) 12 (40.0) 14 (41.2) 11 (36.7)
Nurses (n = 34) n (%)
– – 2.12a 1.27a 1.54a 2.51a 19.29 4.57 5.73 3.08 14.44 2.98 25.01 5.63 23.48 1.57 17.99 5.22 1.92 4.74 2.20 3.08
χ2/z
– – .017 .102 .062 .006 < .001 .103 .125 .215 .002 .226 < .001 .060 < .001 .457 < .001 .073 .590 .094 .533 .214
p
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advance directives (J. A. Lee, 2009). Most patients wanted their advance directives to dictate that they would not receive ICU care, CPR, tracheotomies and artificial ventilation, or radiotherapy, while their families wanted them to receive more aggressive care. However, when family members were asked to place themselves in the patient’s situation, most did not want such aggressive therapies. A study by Kwon et al. (2010) showed consistent findings that 89.9% of patients did not want to receive aggressive treatments while 62% of their families did. Physicians and nurses also had different perceptions of what should be done for patient versus themselves. It may be due to the generation gap or lack of educational preparation for end-of-life. A study of 88 critical care physicians found significant differences even among physicians in the attitudes and practices concerning end-of-life care decisions and the withdrawing and withholding of life-sustaining treatment (Kim et al., 2009). Because there are not any other studies about different perceptions between physicians and nurses in Korea, further studies are needed. As the wishes of family members often differ from those of patients, it is even more important for advance directives to include input from the patients themselves, and to be drawn up before patients lose the capacity to provide that input. However, medical decision-making is influenced by a variety of factors, including cultural norms, regional practices, patient values, physician responsibilities and patient autonomy (S. M. Lee, 2009).The investigators also captured meaningful statements regarding advance directives from participants during the interviews as following. In Korea, the strong filial bonds between parents and children must be considered before applying advance directives based on the statement of one patient who proudly stated, “My son will not leave me to die. He will do everything for me, even against my will.” A previous study conducted in Taiwan also detected similar perspectives among patients, families and healthcare providers (Tang, Liu, Lai, Liu, & Chen, 2005). Patient autonomy is frequently subordinated to the wishes of family members, leading to disagreements between patients, family, and physicians about end-of-life care (Tang et al., 2005). Terminally-ill 192
Japanese patients also rely on family members and physicians for making end-of-life care decisions (Kinoshita, 2007). These cultural characteristics that are common in Asian countries may result in the patient’s advance directive preferences being overridden. Current Korean medical law does not include categories for end-of-life care, but the law governing emergency medical care states that “physicians are not allowed to discontinue emergency care without appropriate reasons,” per Article 10, Chapter 3 (The National Assembly of the Republic of Korea, 2009). Therefore, if patients are transferred to the ICU while unconscious, they must be kept on ventilators until death, brain death, or judicial decision from a court of law (Y. S. Lee, 2009). These days, the voices of physicians as well as patients are rising to demand an advance directive system, meant to protect patients’ rights of self-determination. However, great challenges remain in terms of educating patients, families, and healthcare providers to better provide optimal end-of-life care. To make well-informed decisions for future care, patients and families should be fully educated about each possible form of care and expected outcomes. Educational programs should be developed to help patients and providers understand the issues relevant to decision-making in end-of-life care, and to improve client-provider communication. This study has limitations that should be considered in the interpretation of the results. Regional variations could not be addressed because this study was conducted at six general hospitals located in Seoul and metropolitan area and, thus, generalizability is limited. The sample included patients in the end stage of lung cancer. Patients with severe cognitive impairment were excluded. Therefore, study results can only be generalized to these types of patients.
CONCLUSION The study findings provide that the fundamental evidence necessary for developing advance directive regulations in Korea that there were many differences in perspectives of lung cancer patients, their families, physicians and nurses. As the wishes of family Asian Nursing Research ❖ December 2010 ❖ Vol 4 ❖ No 4
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members often differ from those of patients, Korean health policy makers should consider that end-of-life care decisions should take the wishes of patients into account, and that such decisions should be made before the patients lose the capacity to make them. To make well-informed decisions regarding future care, Korean patients and families must be fully educated about advance directives and expected outcomes.
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