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Journal of Pain and Symptom Management

Vol. 50 No. 2 August 2015

Original Article

Palliative Care Physicians’ Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries Tatsuya Morita, MD, Yasuhiro Oyama, PhD, Shao-Yi Cheng, MD, MSc, DrPH, Sang-Yeon Suh, MD, PhD, Su Jin Koh, MD, PhD, Hyun Sook Kim, PhD, RN, MSW, Tai-Yuan Chiu, MD, MHS, Shinn-Jang Hwang, MD, Akemi Shirado, MD, and Satoru Tsuneto, MD, PhD Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice (T.M.), Seirei Mikatahara General Hospital, Shizuoka; Division of Clinical Psychology (Y.O.), Kyoto University, Kyoto, Japan; Department of Family Medicine (S.-Y.C., T.-Y.C.), College of Medicine and Hospital, National Taiwan University, Taipei, Taiwan; Department of Family Medicine (S.-Y.S.), Dongguk University Ilsan Hospital, Dongguk University School of Medicine, Seoul; Department of Hematology and Oncology (S.J.K.), Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan; Department of Social Welfare (H.S.K.), Korea National University of Transportation, Chungju City, South Korea; Department of Family Medicine (S.-J.H.), Taipei Veterans General Hospital and National Yang Ming University, School of Medicine, Taipei, Taiwan; Palliative Care Team (A.S.), Seirei Mikatahara General Hospital, Shizuoka and Department of Multidisciplinary Cancer Treatment (S.T.), Graduate School of Medicine, Kyoto University, Kyoto, Japan

Abstract Context. Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualized for each patient. Objectives. The aim was to explore the differences in attitude toward patient autonomy and a good death among East Asian palliative care physicians. Methods. A cross-sectional survey was performed involving palliative care physicians in Japan, Taiwan, and Korea. Physicians’ attitudes toward patient autonomy and physician-perceived good death were assessed. Results. A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; whereas 7.4% of Japanese physicians agreed. Physicians’ attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. Conclusion. There are considerable intercountry differences in physicians’ attitudes toward autonomy and physicianperceived good death. East Asia is not culturally the same; thus, palliative care should be provided in a culturally acceptable manner for each country. J Pain Symptom Manage 2015;50:190e199. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Culture, end of life, Asia, good death, autonomy

Address correspondence to: Tatsuya Morita, MD, Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, 3453 Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Mikatahara-cho, Hamamatsu, Shizuoka 433-8558, Japan. E-mail: [email protected] Accepted for publication: February 14, 2015. 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2015.02.020

Vol. 50 No. 2 August 2015

Cross-Cultural Study in East Asia

Introduction An understanding of cultural differences is very important for providing quality palliative care.1 What patients and families believe is appropriate at the end of life is heavily influenced by culture, and culture also determines what is regarded as appropriate in a variety of medical practices, such as disclosure of malignancy, end-of-life discussions, advance care planning, and nutrition and hydration.1e6 A common view is that the world can be divided into two cultures: individualist (e.g., North America and Northern Europe) or collectivist/family focused (e.g., Asia and Southern Europe), and many studies have predominantly focused on understanding the differences between these two cultures.7e11 Recent studies, however, have more thoroughly investigated differences and similarities among countries within the same cultural category, such as within European countries.12e16 East Asia is traditionally regarded as a typical family centered region, but there have been no large systematic studies regarding cultural differences in end-of-life care within East Asia.17e19 Among East Asian countries, Taiwan is unique because it was the first county to approve that withdrawal/withholding of lifesustaining treatment is completely legal, by the Natural Death Act.20e22 Recent studies have suggested that patient autonomy is becoming a more important element in Taiwanese populations.20e22 Korea is characterized by a Confucian culture, and filial piety (devotion to and respect for parents) influence on end-of-life decisions.19,23e25 For instance, sons/daughters of a patient usually make maximum efforts to provide parents with medical treatments, such as hydration, hospitalization, or mechanical ventilation. Traditionally in Japan, unawareness of impending death and pokkuri (sudden death) is one type of good death; and letting authorities make decisions rather than self-determination (omakase) is one type of socially accepted decisionmaking style.9,10,19 In all these countries, the situation is rapidly changing, and clarification of the potential differences in end-of-life care among East Asian countries is valuable for providing palliative care that is individualized for each patient. The primary aim of this study was to explore the potential differences in attitudes toward patient autonomy and physician-perceived good death in East Asian palliative care physicians.

Methods This was a cross-sectional survey in Japan, Taiwan, and Korea. We distributed a questionnaire to palliative care physicians. Because there was no physician registry in one country and feasible survey methods (e.g., postal, web, or handout) were different among

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countries, we decided to adopt the most feasible methods according to the actual situation in each country.

Subjects and Procedures In Japan, all 605 palliative care physicians certified by the Japanese Society of Palliative Medicine by June 2012 were recruited. Physicians’ names and affiliations were obtained from the Web site of the Society, and questionnaires were distributed by mail with two reminders (a total of three). No incentive was provided. In Taiwan, all 578 palliative care physicians certified by the Taiwan Academy of Hospice Palliative Medicine by November 2013 were recruited. Physicians’ electronic mail addresses were obtained from the Academy, and questionnaires were distributed using the Web site, with two reminders (a total of three). A small incentive was given to each participant completing the survey. In Korea, because of the lack of a nationwide registry of palliative care physicians, questionnaires were distributed via three methods. One was five spot surveys at academic congresses or symposiums related to palliative medicine from October 2013 to January 2014, and a total of 97 responses were obtained. The second was an electronic mail survey, and a total of 32 responses were obtained from a convenience sample of 110 palliative care physicians through a local network. The third method was an additional hospital-based survey involving palliative care physicians working at three hospitals, and 82 responses were obtained. A small monetary reward was given for each response. In all countries, responses to the questionnaire were voluntary, and confidentiality was maintained throughout all investigations and analyses. No identification numbers were linked with the original data. The ethical and scientific validity were approved by institutional review boards of each country.

Measurements Measurement outcomes included Likert-type scales about physicians’ attitudes toward patient autonomy and physician-perceived good death in addition to demographic data. These measurement outcomes were developed based on a systematic literature review on this topic,1e16,20e30 discussion among research groups, and preliminary in-depth interviews. Face validity was confirmed by pilot testing, and the questionnaire was simultaneously developed in Japanese, Taiwanese, Korean, and English. In terms of demographics, we collected data regarding the physicians’ clinical experience (years), sex, specialty, working area (urban vs. rural), religion, and perceived importance of religion. Religion was asked about using the question: ‘‘What do you consider

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Morita et al.

to be your religion or philosophy of life?,’’ the same as in a previous international survey.13 Potential responses included a specific religion (e.g., Christianity, Buddhism), a specific philosophy of life other than a specific religion (e.g., humanism, existentialism), and no specific religion/philosophy of life.13 Physicianperceived importance of religion was assessed on a sixpoint Likert scale from 1 ¼ not important to 6 ¼ very important. To explore physicians’ attitudes toward patient autonomy, we used the same questions to ensure ease of comparison.26 The physicians were asked about their opinions regarding disclosure of a malignant disease in three types of situations, using a four-point Likert scale from 1 ¼ strongly disagree to 4 ¼ strongly agree. The situations were 1) the doctor should tell the patient first and then let the patient decide whether his or her family should be told, 2) the doctor should tell the patient’s family first and then let them decide whether the patient should be told, and 3) assuming that the family has been told and they do not want the patient to be told, the doctor should tell the patient anyway. To explore physician-perceived good death, we adopted a conceptual framework from previous studies about good death in these three countries and Western culture.27e30 The physicians were asked about how important they perceived each element in terminally ill patients to be, using a seven-point Likert-type scale from 1 ¼ not important at all to 7 ¼ essential. We determined 12 concepts to be investigated a priori: physical comfort, autonomy (four items, alpha ¼ 0.76), preparation (four items, alpha ¼ 0.87), life completion (four items, alpha ¼ 0.81), religion (three items, alpha ¼ 0.91), contribution to others, not being a burden to others, receive maximum treatment, being free from tubes and machines, dying at home, humor, and being cognitively intact (one item for each). For a domain with multiple items, the score was defined as the mean of item scores, and, thus, a higher score indicates a higher physician-perceived importance of the domain. All items were from previous good death studies.27e30 The actual questions were on physical comfort (the patient’s physical symptoms are adequately relieved), autonomy (the patient has arranged everything according to his or her own will; the patient has the right to determine who will be with him or her at the time of death; the patient participates in decisions about medical treatment; and the patient is able to choose a decision maker), preparation (the patient is well prepared for death; the patient understands the fact that he or she is dying; the patient knows how long he or she is expected to live; and the patient knows what to expect about his or her condition in the future), life completion (the patient has no regrets; the patient

Vol. 50 No. 2 August 2015

was able to say what he or she wanted to the people closest to them; the patient bids farewell to family members and friends before death; and the patient fulfills his or her own desires at the end of life), religion (the patient is supported by his or her religion; the patient meets with a clergy member; and the patient has faith), contribution to others (the patient feels that he or she can contribute something to others), not being a burden to others (the patient is not being a burden to others), receive maximum treatment (the patient believes that all available treatments have been tried), being free from tubes and machines (the patient is not connected to medical instruments or tubes), dying at home (the patient is able to die at home), humor (the patient maintains a sense of humor), and being cognitively intact (the patient is mentally alert).

Statistical Analyses Physicians’ backgrounds were compared among the three countries using analysis of variance or Chisquared tests, where appropriate. Specialty was categorized as internal medicine (general internal medicine, subspecialties of internal medicine, psychosomatic medicine, and family practice), surgery (surgery and related subspecialties, such as gynecology and otorhinolaryngology), anesthesiology (anesthesiology and pain medicine), and oncology (medical oncology, radiation oncology, and clinical oncology). For comparisons, physicians’ responses regarding attitudes toward autonomy were divided into two categories (strongly disagree/disagree vs. agree/strongly agree). As our primary interest was differences among the countries, we calculated the percentages and 95% CIs for each country’s respondents and compared the prevalence using multivariate regression analyses with adjustments for physicians’ backgrounds. Furthermore, we explored the determinants by logistic regression analyses using physicians’ countries and backgrounds as independent variables. Regarding physician-perceived good death, each domain score was calculated as means of items after calculating Cronbach’s alpha and compared among the countries using analysis of variance with the Tukey post hoc test. To adjust for differences in physicians’ backgrounds, multivariate linear regression analyses were performed using all variables with the unadjusted means for visualization. We calculated Hedges’ g to evaluate the size of these differences; for interpretation, Hedges’ g values of 0.2, 0.5, and 0.8 were regarded as small, moderate, and large differences, respectively.31,32 The P-value regarded as significant was less than 0.05. All analyses were performed using the Statistical Package for the Social Sciences, version 11.0 (SPSS, Inc., Chicago, IL).

Vol. 50 No. 2 August 2015

Cross-Cultural Study in East Asia

Results Among the 605 and 578 physicians recruited from Japan and Taiwan, respectively, we finally obtained a total of 505 and 207 responses (83% and 36%, respectively). In Korea, a total of 211 responses were obtained.

Physicians’ Backgrounds There were marked differences in physicians’ backgrounds among the countries (Table 1). Female physicians comprised 30% or less in Japan and Taiwan, whereas half of the respondents were females in Korea. Dominant specialties of palliative care physicians were internal medicine and oncology in Korea; internal medicine, surgery, and anesthesiology in Japan; and internal medicine in Taiwan. Clinical experience was the longest in Japanese physicians. About half of Korean and Taiwanese physicians stated that their religion was Christianity and Buddhism, respectively, and about 70% of the Japanese physicians stated that they had no religion.

Patient Autonomy In multivariate analyses, the country was the strongest determinant of physicians’ attitudes toward autonomy (Table 2). More than 70% of the physicians in all three countries agreed with the statement that a patient should be told first and then the family, but Japanese and Taiwanese physicians were significantly more likely to agree than Korean physicians. About 40% of Korean and Taiwanese physicians agreed with the statement that family should be told

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first and then the patient, but only 7.4% of Japanese physicians agreed. A total of 68% of Japanese physicians agreed with the statement that the patient should be told even if the family disagrees, whereas 48% and 52% of Korean and Taiwanese physicians agreed, respectively. In the multivariate model (Table 3), physicians’ attitudes with respect to patient autonomy were independently and significantly correlated with the country (Japan), male sex, physicians’ specialty of surgery and oncology (compared with internal medicine), longer clinical experience, and physicians having no religion (compared with Christian physicians).

Good Death In all 12 components of a good death, there were significant differences by country (Table 4); physician-perceived importance of each good death domain is depicted in Fig. 1. Japanese physicians regarded physical comfort and autonomy as significantly more important (effect size 0.22 and 0.29 for Korea and Taiwan, respectively). Japanese physicians regarded the following components as less important than physicians in the other two countries: preparation (effect size 1.0 for Korea and 0.90 for Taiwan), religion (1.3 and 1.5, respectively), not being a burden to others (0.64 and 0.57, respectively), receiving maximum treatment (0.57 and 0.50, respectively), and dying at home (0.23 and 0.38, respectively). Taiwanese physicians regarded life completion as significantly more important (effect size 0.22 for Japan and 0.33 for Korea) and being free from tubes and

Table 1 Physicians’ Characteristics Characteristics Sex, n (%) Male Female Specialty, n (%) Internal medicine Surgery Oncology Anesthesiology Clinical experience, yrs, mean (SD) Perceived importance of religion,b mean (SD) Religion, n (%) Christianity Buddhism Other religions (Taoism, Shintoism) Specific philosophy (no religion) No religion/specific philosophy Working area, n (%) Urban Rural

Korea (n ¼ 211)

Japan (n ¼ 505)

Taiwan (n ¼ 207)

105 (51) 103 (49)

417 (83) 85 (17)

138 (70) 59 (30)

119 19 67 4 11.3 4.0

(57) (9.0) (32) (1.9) (8.3) (1.2)

147 183 52 116 26.5 3.7

(30) (37) (10) (23) (7.5) (1.4)

158 4 33 3 14.4 3.9

(80) (2.0) (17) (1.5) (8.9) (1.6)

119 (56) 27 (13) 0 38 (18) 27 (13)

55 92 16 206 134

(11) (18) (3.2) (41) (27)

28 84 21 36 29

(14) (42) (11) (18) (15)

136 (65) 75 (36)

273 (55) 228 (46)

Palliative Care Physicians' Attitudes Toward Patient Autonomy and a Good Death in East Asian Countries.

Clarification of the potential differences in end-of-life care among East Asian countries is necessary to provide palliative care that is individualiz...
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