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Abstract
Purpose The debate about the end-of-life care decision is becoming a serious ethical and legal concern in the Far-Eastern countries of Korea, China and Japan. However, the issues regarding end-of-life care will reflect the cultural background, current medical practices and socioeconomic conditions of the countries, which are different from Western countries and between each other. Understanding the genuine thoughts of patients who are critically ill is the first step in confronting the issues, and a comparative descriptive study of these perspectives was conducted by collaboration between researchers in all three countries.
Methods Surveys using self-reporting paper questionnaire forms were conducted from December 2008 to April 2009 in Korea (six hospitals in two regions), China (five hospitals in four regions) and Japan (nine hospitals in one region). The subjects were patients who were critically ill who had been diagnosed as having cancer. A total of 235 participants (Korea, 91; China, 62; Japan, 52) were eventually recruited and statistically analysed.
Results Most respondents had sometimes or often thought of their own death, mostly fear of ‘separation from loved ones’. They wanted to hear the news regarding their own condition directly and frankly from the physician. A quarter of them preferred making end-of-life care decisions by themselves, while many respondents favoured a ‘joint decision’ with their family members. The most favoured proxy decision maker was the spouse, followed by the children. Most admitted the necessity of ‘advance directives’ and agreed with artificial ventilation withdrawal in irreversible conditions. The most common reason was ‘artificial prolongation of life is unnecessary’. Most respondents agreed with the concept of active euthanasia; however, significant differences were sometimes observed in the responses according to variables such as patient's country of origin, age, gender and education level.
Conclusion Patients in Far-Eastern countries gave various responses regarding end-of-life care decisions. Although familial input is still influential, most patients think of themselves as the major decision maker and accept the necessity of advance directives with Westernization of the society. Artificial ventilation withdrawal and even active euthanasia may be acceptable to them.
- End of life decision
- Withdrawal of LST
- euthanasia
- far east Asian countries
- biomedical ethics
- abortion
- aged
- allocation of healthcare resources
- allowing minors to die
- allocation of organs/tissues
- elderly and terminally ill
- attitudes toward death
- care of the dying patient
- death education
- education for healthcare professionals
- clinical ethics
- concept of health
- philosophy of medicine
- public health ethics
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- End of life decision
- Withdrawal of LST
- euthanasia
- far east Asian countries
- biomedical ethics
- abortion
- aged
- allocation of healthcare resources
- allowing minors to die
- allocation of organs/tissues
- elderly and terminally ill
- attitudes toward death
- care of the dying patient
- death education
- education for healthcare professionals
- clinical ethics
- concept of health
- philosophy of medicine
- public health ethics
Introduction
In the USA and in a number of European countries, legal and ethical frameworks and practices have already been established to deal with the issue of end-of-life decision making.1 2 Their approach is mostly based on the concept of ‘autonomy’ and the ‘best interests’ of the patient, accepting ‘advance directives as a sign of exercise of autonomy in decision making’. Living wills and advance directives have become acceptable to many people in the USA and in some regions of Europe.3 However, they are still not widely accepted in Far-East-Asian countries, and questions remain about the role of the ‘autonomy’ concept and ‘advance directives’ in these countries having a family-oriented Confucian culture.4–6
The Far-East-Asian countries of Korea, China and Japan have experienced cultural and historical interactions since ancient times. As in the USA and other Western countries, the debate about the end-of-life care decision is becoming a serious ethical and legal concern in the three countries with the prolongation of lifespan, economic development and wide availability of terminal patient care units. The issues regarding end-of-life decisions for patients who are terminally ill will reflect the cultural background, current medical practices and socioeconomic conditions of a given society where the practice is performed. Understanding the genuine thoughts of the patients themselves will shed light on the issues involved, although these will not necessarily represent the views of the general population. A comparative study will be helpful to understand the similarities and differences of ethos or mentality of the three countries in dealing with these sensitive issues.
For the above reason, we conducted a survey to investigate the attitudes of patients who are seriously ill toward life-sustaining treatment (LST) and other end-of-life care related issues in Korea, China and Japan.
Methods
This survey was conducted by a paper questionnaire originally developed by the Korean research team. An English version and native language (Chinese and Japanese) versions of the questionnaire were provided for each country, and edited by the main researchers in China and Japan in accordance with the English version. The survey was performed from December 2008 to April 2009 in general hospitals located in Korea (six hospitals in the Seoul and Gyeonggi areas), China (five hospitals in Beijing, Shanxi, Hunan Province and Inner Mongolia) and Japan (nine hospitals in the Gunma area). The target group was patients who were seriously ill and who had been diagnosed as having cancer in the last 5 years. The total number of questionnaire items was 19, and 6 basic demographic questions were added. The survey protocol, including the informed consent form, was reviewed by the Institutional Review Board of Mokdong Hospital of Ewha Womans University (approval no.: 179-18). The informed consent form was added to the first page of the survey questionnaire, and the patient was given the option of filling out the questionnaire after reading the page. In most cases, the patient heard a verbal explanation of the goal of the survey and decided whether or not to participate. The collected data was edited, coded, and analysed using Microsoft Excel (Microsoft, Redmond, Washington, USA) and SPSS V.12.0 (SPSS, Chicago, Illinois, USA). Statistical analysis was performed using the χ2 method. Fisher's exact test was also applied for items where the number of responses was too small (<5).
Results
Demographic features of the respondents
The major characteristics of respondents are shown in table 1. Significant differences were observed between the three countries, especially in terms of gender (p=0.005), marital status (p=0.007) and religion (p<0.001). It was difficult to persuade patients who were seriously ill to complete a questionnaire on sensitive issues about end-of-life care, and it was harder to standardise respondent groups between the three countries, which have different healthcare systems. For the level of education, the percentages of higher educated individuals with college degrees or higher among the general population were 37% in Korea, 43% in Japan and 8.9% in China.7 Considering that the level of higher education is generally high in the younger age group, more highly educated people were found among Chinese respondents.
Demographic feature of the respondents
Attitudes towards death
Most respondents (Korean 62.2%, Chinese 48.4% and Japanese 55.2%) said that they sometimes had thought of their own death from their disease, but Korean and Chinese respondents did so less often than Japanese respondents. Few Korean respondents reported that they ‘often’ or ‘always’ thought of death. Fewer Chinese respondents than Korean or Japanese respondents reported that they often or frequently fear death. The most common reason for fear of death (Korean 60.8%, Chinese 58.5% and Japanese 48.8%) was ‘separation from loved ones’ and the next was ‘physical pain in the dying process’. There were differences in responses regarding belief in the existence of the afterworld and the soul, where close to half the respondents in Japan and Korea reported that they believed in the existence of an afterworld and soul, whereas only 17% of the Chinese respondents did (table 2).
Attitudes toward death and afterworld
Delivering bad news and decision making in end-of-life care
Most respondents wanted to hear the truth directly and frankly if they fell into a terminal condition (Korean 71.4%, Chinese 80.3% and Japanese 61.5%). For this answer, no statistical differences between the countries were observed. Most respondents strongly favoured hearing such news directly from a ‘physician’ (Korean 77.5%, Chinese 62.9%, Japanese 89.6%), and the next most favoured was a spouse among Korean (16.9%) and Chinese (17.7%) respondents. For this answer statistical differences were noted; more people in Japan favoured the physician over the spouse when compared with Korea and China. With regard to who should make medical care decisions under the presumed irreversible medical condition, the respondents were almost equally divided between ‘the patient’ and ‘the patient and all family members’ in all three countries. Together, these two alternatives accounted for over half the responses. The vast majority of respondents also wanted the patient involved; alternatives that included the patient accounted for 94.3% of the responses in Korea, 74.3% in China and 94% in Japan. Similarly, the majority of patients wanted the family involved in the decision making process (65.1% in Korea, 54.8% in China and 57.2% in Japan). The most favoured proxy was the spouse (Korean 59.3%, Chinese 53.2% and Japanese 47.9%) and children (Korean 30.2%, Chinese 22.6% and Japanese 37.5%). No respondents designated a priest or monk as proxy decision maker, even in Korea and Japan where many respondents have a religion. Most respondents (Korean 85.5%, Chinese 79.3% and Japanese 96.1%) admitted the necessity of legally authorised ‘advance directives’ for medical decision making when the patient become unable to communicate by unconsciousness or other reasons.8 There are statistical differences between the countries in that fewer respondents in Japan felt that they were seldom or never necessary compared with Korea and China (table 3).
Favourable way of delivering bad news
Ventilator withdrawal in an irreversible condition and attitudes towards euthanasia
In irreversible conditions, most Korean (89.9%) and Japanese (90.2%) respondents agreed with withdrawal of artificial ventilation, whereas more than half of Chinese (55.7%) respondents wanted continued treatment. This difference is statistically significant. Among the group who agreed with ventilation withdrawal, the main reason is the thought that ‘the artificial prolongation of human life is unnecessary and unnatural’ for Korean (63.7%), Chinese (46.4%) and Japanese (46.5%) respondents. More Japanese respondents mentioned ‘economical or emotional burdens to family’ from the ventilator treatment (46.5%), compared with Korea (23.8%) and China (25%). More Chinese (28.6%) than Koreans (12.5%) or Japanese (7.0%) said the reason for ventilator withdrawal preference was avoidance of ‘too much pain and suffering’. For the question ‘if ventilation treatment is free, would you maintain ventilation until the last moment or deny it?’ 38.6% of Korean and 72.1% of Chinese respondents said that they would take the ventilation treatment, while only 9.6% of Japanese respondents gave the same answer. The main reason for continuance of ventilation treatment to the last moment is the uncertainty of medical judgements about ‘irreversible conditions’ among Korean (55.9%) and Chinese (90.9%) respondents, while ‘fear of death’ was the reason among four of total five Japanese respondents. With regard to the question about active euthanasia (‘If a patient suffering from irreversible and severely painful disease asks his physician to shorten the dying time by a fatal injection, do you believe that the physician should accept the request?’), the vast majority of Japanese participants said it should depend on the case (88.5%), whereas answers were more equally divided among acceptance and dependence on the case by Korean and the Chinese participants. A higher number of Chinese (11.3%) than Japanese (3.8%) or Korean (2.2%) patients would never accept active euthanasia (table 4).
Attitudes toward end of life care and euthanasia
Results of statistical analysis using gender/age/education factors in each country
With regard to gender, only a few significant differences between the responses of men and women were found. In China, 93.7% of male respondents wanted to hear the truth directly, whereas 21.9% of female respondents favoured a stepwise approach to delivering bad news (p=0.049). In Korea, 42.9% of female respondents complained about physical pain as the most difficult aspect of the disease while 34.6% of male respondents gave the same response, differences which were statistically significant (p=0.047).
Respondents were categorised based on age for analysis as follows: young (<40 years old), middle-aged (40–60 years old), and old (>60 years old). Based on age, different responses were shown in Korea and Japan in particular with regard to attitudes towards death. For example, respondents in the young age group felt the fear of death more frequently in Japan (p=0.011). The most difficult aspect related to the disease was ‘anxiety of death’ in the young age group (71.4% of the responses), ‘burden to the family’ for the middle-aged group (61.1% of the responses) and ‘physical pain’ for the old age group (36.8% of the responses) in Japan (p=0.012). The most frequent answer to the same question in Korean respondents were ‘physical pain’ in all age groups (50.0% in young, 36.8% in middle-aged and 35.1% in old), but 31.6% of the middle-aged group answered ‘burden to the family’ and 24.3% of the old age group answered ‘anxiety of death’ (p=0.015). The most frequent reason for fear of death was ‘annihilation of the self’ for the young age group (40% of the responses), but ‘separation from loved ones’ for the other age groups (73.5% in middle-aged and 56.8% in old) in Korea (p<0.001). With regard to decision making at the end of life, different responses were given about the favoured decision maker (p=0.022) and proxy decision maker (p=0.005): ‘myself’ (41.7% of the responses) and ‘spouse’ (56.0%) in the younger age group, with ‘myself and whole family’ (50.0% of the responses) and ‘children’ (55.6% of the responses) in the old age group in Korea. This may reflect the rapid social changes in Korea. Similar trends between age groups were witnessed in the data of China and Japan, but most of them were not statistically significant. However, it should be noted that the negative responses to the ventilator withdrawal in an irreversible condition were significant (p=0.012) in the younger age group (37.5%) compared with the middle-aged (0.0%) and old age groups (8.7%) in Japan.
Education level also played a role in the responses. The respondents were classified into college graduates (CG) and non-college graduates (NCG) by their final degree for statistical analysis. In China, the most common reason for fear of death was ‘separation from loved ones’ for 81.8% of CG, but the same answer was given by only 46.2% of NCG. A total of 42.3% of NCG chose ‘physical pain’ (p=0.006). In Korea, 54.0% of NCG would take the ventilation treatment until the last moment if it were free, but only 20.0% of CG answered in the same manner (p=0.024). The most common reason for persistence of ventilation treatment was ‘religious beliefs’ (50.0%) in CG and ‘uncertainty of the diagnosis’ (55.2%) in NCG (p=0.020). In Japan, CG showed more decisive attitudes to the existence of the afterworld and soul; their existence was strongly denied by 30.8%, of CG and 10.3% of NCG, while strongly believed by the same rate of CG and 0.0% of NCG (p<0.001).
Discussion
The patients' responses from the three different East-Asian countries about ‘the end-of-life decision’ issue show similarities as well as differences. Most respondents sometimes or often were concerned about their own death in the three countries, not being free from fear of death. However, Chinese respondents showed more ‘brave’ or ‘stoic’ attitudes towards death when compared with those of Korea or Japan. However, the most common reason for fear of death was the anxiety of separation from loved ones (family) in the three countries. The weight of fear of the afterworld was relatively small in the three countries; it is an interesting result considering that most Korean and Japanese respondents believed in the existence of the afterworld whereas most Chinese did not. In other words, the role of beliefs in the afterworld is limited in the lives of East-Asian people, regardless of their beliefs about it. The disbelief of the afterworld among most Chinese respondents may be due to their cultural and societal background based on Marxian materialism. However, the result may suggest that under the strong influence of Confucianism, Taoism, Buddhism and Shamanism, concern about the afterworld in East-Asian countries is not as strong as in monotheistic cultures of Christian or Muslim countries.9 Monotheistic faiths are unique in that they not only personalize the spiritual exchange relationship between the individual and the one deity, but due to the fact that this relationship extends into the afterlife as well, they also enhance individual accountability. On that basis, monotheistic faiths expand their adherents' time horizon beyond biological life and impact the time discount between one's lifetime and the after-life'. There are some traces of thoughts about ‘afterlife’ and even ‘judgment’ in the tradition of Shamanism and Buddhism, but they are not so clear as in monotheistic religions. In the context of traditional philosophical teachings, East-Asian people tend to see death as a natural phenomenon, a close of the cycle of life and the unavoidable destiny of all living things.10
With regard to bad news, most respondents in the three countries wanted to hear about it directly and frankly from their physician. In many Asian cultures, it is perceived as unnecessarily cruel to directly inform a patient of a cancer diagnosis, and the emotional reaction to news of serious illness is also considered harmful to health.11 In a survey in China, for example, 51% of respondent doctors reported that most families ask clinicians to withhold the truth from the patient.4 In another survey on Japanese and US residents, 94% of the Japanese respondents indicated that they would inform the patient and the family and 44% reported that they would inform the family first.12 In a survey of Korean–Americans, only 33% of the Korean–Americans agreed that one should tell a patient who was terminally ill about the prognosis.13 These results and currently prevailing attitudes, especially among physicians and healthy citizens about delivering bad news or ‘truth telling’ in East-Asian countries, seem to be somewhat different from the genuine wishes of the patients themselves as documented in our survey. We have found that 80.3% of the Chinese, 71.4% of the Koreans and 61.5% of the Japanese patients would like to hear the truth directly and frankly. It would seem that many physicians or family members in these countries worry too much about the abrupt psychological or physical responses of the patient when he or she is told the news about their prognosis, and that this attitude is not in accordance with the wishes of the patients themselves in the East-Asian countries of our survey. (We have to admit that we did not specify the ‘bad news’ about ‘prognosis’ in the questionnaire. An in-depth interview with patients who were terminally ill in Korea showed that they wanted the truth about their prognosis given in a gentle and cheering manner by their doctors; a review by Innes et al shows that there is a significant variability in the sharing of prognostic information with patients who had advanced cancer.)14 15 Such an attitude may of course be justified for other reasons, such as conforming to what is regarded as socially appropriate behaviour and good manners with regard to showing piety to parents and elders, but the wishes of the patients themselves to get information regarding their own condition should be strongly considered, according to this result.
Several writers have previously pointed out the importance of the family's role in the consent or decision making process in Asian countries.12 16 17 Our data paints a more complex picture. About a quarter of the patients in all countries prefer to make their own decisions. However, a substantial number of respondents in all countries favoured involving their families in one way or another, but very few would leave the decisions wholly in the hands of the family except in China, where 17.7% of the respondents favoured this option. Physician involvement in decision making was less important in all countries, with some exceptions again in China, where 8.1% felt that the physician alone should be the decision maker. In Korea, a substantial number of respondents wanted the physician involved with the patient and family members (21.3%). It is hard to generalise from these results about a specific Asian pattern of decision making at the end of life. The results show great variability in the preferences of patients, within and between the countries.
Most of our respondents also admitted to the necessity of ‘advance directives (ADs)’, which is similar to the results of other studies; in a survey of the general public in Japan, over 60% of respondents agreed that it is better to express their wishes regarding advance directives.5 In Korea, 95.5% of the surveyed patients who were terminally ill in a hospice care ward agreed with ADs, although 97% of the respondents confessed that they were not familiar with them.18 Actually the concept of ‘advance directives’ is not so familiar to the people in Asian countries. The survey item for this question presented a brief explanation of ‘AD’ as follows: ‘advance directive’ is a set of instruction, usually written, intended to allow a patient's current preferences to shape medical decisions during a future period of incompetence. It appears that patients in East-Asian countries admit some usefulness of ADs in certain conditions, as they do not want to leave the decision regarding their treatments fully in the hands of their families and doctors. It may be due to the Westernization of the society of the three countries. ADs would function as a delivery method of the patients' wishes when they can't fully express their preference. However, in some cases, the family or the doctors may not have an ethical duty only to follow the ADs of the patient. In France, ADs are also differently interpreted and applied among medical professionals compared to the USA.19
In regard to the withdrawal of a LST (artificial ventilator) in an irreversible condition, the three countries showed significant differences. The Chinese respondents seemed to favour more ‘aggressive’ treatment than the respondents of the other countries; they wanted to continue ventilator treatment (55.7%) in irreversible conditions, whereas only 10.1% of Korean and 9.8% of Japanese respondents did. The most common reason for continuing artificial ventilation is ‘uncertainty of the diagnosis of an irreversible condition’ for Chinese (90.9%) and Korean (55.9%) respondents, but ‘fear of death’ for Japanese respondents (80.0%). This result may be due to the difference in healthcare systems and clinical cultures between the three countries. Japanese patients seem to have more trust in their medical professionals than those of Korea or China, and the acceptance of death is more prevalent among Japanese patients, who have a longer lifespan than Koreans and Chinese. A similar feature is witnessed in the result that 72.1% of Chinese respondents chose to continue the ventilator care, while only 9.6% of Japanese respondents did on the condition that treatment is free. It may be also due to the fact that most patients are not greatly concerned about medical costs in Japan, where a better national healthcare system is available.
Regarding active euthanasia, almost all respondents agreed with its necessity. However, Japanese respondents showed more reserved attitudes in comparison with the other groups (higher rate of ‘case by case’ agreement in Japan). In fact the debate about euthanasia legalisation is relatively active in China; Hu Yamei, a politician, submitted several motions to the National People's Congress in support of euthanasia for the first time in 1988, saying that legalising mercy killing would ease the suffering of patients who are terminally ill and reduce the burden of an already overstretched healthcare system.20 In 1996, 2003 and 2006, similar motions were submitted to the National People's Congress.21 Currently, however, any practice of euthanasia is illegal in China, and some people argue that euthanasia legislation should be considered only when the medical care system, the moral standing of medical staff and the social insurance system have been greatly improved.22 In Japan, euthanasia is highly restricted, however, some portion of the general public and patients in palliative care units desire the practice of euthanasia according to several surveys.23 The practice of euthanasia is also illegal in Korea, but the Consensus Committee on the Withdrawal of LST designated by the Minister of Health and Welfare announced guidance regarding the withdrawal of LST on 15 July 2010. The guidance permits withdrawal of LST from a patient who is terminally ill according to his/her advance directives and via a review of the hospital ethics committee.24 In summary, the legalisation of euthanasia is not currently expected in these three countries; however, more people in these countries would agree with euthanasia if some social or healthcare condition were met.
Given all the differences of answers between the respondents of the three countries, it is difficult to come to a consensus about a general ‘East-Asian view’ on end-of-life issues. Nevertheless, some writers have noted the alleged ‘Asian values’ that underscore the family value and harmony of the community in contrast with the alleged ‘Western values’ highlighting individual autonomy and personal freedom.25 In research regarding crosscultural issues at the end of life, Korea, China and Japan were noted as ‘Far-East-Asian cultures’ in which non-verbal communications are often a vital means of interpersonal connection, filial piety is an important concept, and the issue of face may be present.26 However, end-of-life issues reflect the differences in culture, socioeconomic development, healthcare system, etc. of each country, and the common notion of ‘differences in Eastern and Western cultures’ for this issue should be re-examined more cautiously.
This survey, of course, has its limitations; it was conducted in different medical settings in three countries, and the conditions of the respondents were not as consistent as desired. The lack of standardisation of the education level of the respondents in each country was particularly critical.
In addition, the results could not reflect each respective country as a whole because the survey was performed in limited areas. The samples were not randomly collected and the response rates could not be estimated, so the generalisability of this study is limited. Some missing values of the responses might hurt the results of the analyses. The different life expectancies and expectations of the afterlife may influence the attitudes of the respondents to end-of-life care issues in each country. Nevertheless, this study shows some meaningful and useful data for future discussions on the withdrawal of treatment and care of patients who are terminally ill in Far-Eastern regions sharing a historical and cultural background. These issues will become more and more important and prominent in these countries, as well.
Acknowledgments
The authors thank Reidar K Lie (University of Bergen) for his valuable advices and comments on the construction and discussion of this article.
References
Footnotes
Funding This work was supported by the Korean Research Foundation Grant funded by the Korean government (MOEHRD, Basic Research Promotion Fund) (KRF-2008-321-A-00024).
Competing interests None.
Ethics approval Ethics approval was provided by Ewha Womans University Mokdong Hospital.
Provenance and peer review Not commissioned; externally peer reviewed.
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