The social acceptance of euthanasia does not stem from patient's autonomy in Japan

- Noritoshi Tanida, M.D.
Department of Internal Medicine 4, Hyogo College of Medicine,
1-1 Mukogawacho, Nishinomiya, Hyogo 663, Japan.
Fax: Int+81-798-45-6661
Eubios Journal of Asian and International Bioethics 7 (1997), 43-46.


Abstract

Attitudes towards euthanasia and death-with-dignity of people who participated in the seminar on "life" were studied with questionnaires before and after a lecture regarding these issues. The results indicated that the number of the participants who accepted patient's autonomy increased after the lecture. However, the respondents who accepted the idea of patient's autonomy were less likely to accept euthanasia in general or wish for it in their own case. These data suggest that in this Japanese group, the acceptance of euthanasia may stem from a form of mercy-killing as part of cultural and historical background, not from the autonomy principle.

Introduction

Discussion regarding euthanasia in Japan has begun openly since the Tokai University and Keihoku Hospital euthanasia cases (1,2). Recent disclosures of non-voluntary passive euthanasia in the mass media were probably a result of this phenomenon (Mainichi Newspaper, January 6 and 10, 1997). However, once these events became public, attending doctors have been trying to deny that the acts constituted euthanasia. Their attitudes are presumably because of fear of murder charges as the physician of the Tokai University Hospital was convicted, and because euthanasia remains a taboo issue in postwar Japan (3).

On the other hand, Japan has a long history of practicing euthanasia (4). For example, harakiri is known worldwide as an honorable suicide by Japanese samurai warriors. A samurai who performed harakiri was beheaded by another samurai as soon as the act of harakiri was begun. Beheading at harakiri is one of other examples of euthanasia in Japan. The Bioethics Counsel of the Japanese Medical Association put it "there is no way other than allowance of euthanasia in very exceptional occasions as it is practiced currently" (5). Thus, euthanasia has been accepted at least unconsciously in the mind of Japanese people (4). Yet, there is public pretense that there is no euthanasia or there are no people who ask for euthanasia in Japan (1,3,6). These confusions are presumably caused to a greater extent by such Japanese attitudes as "putting a lid on" and conflict avoidance, which prevents open discussion thereby inevitably leads to lack of understanding (3). Open discussion is vital for rational understanding regardless of whether one accepts or rejects euthanasia.

The Inter College Nishinomiya has been organized since 1994 by 10 universities and colleges in Nishinomiya City, located in Hyogo Prefecture in Osaka Bay. It holds an annual series of open seminars to promote communication and understanding between citizens and academics as well as among academics. The theme in 1995 was "life," and the author took part in the seminar with the third lecture "Death-with-dignity, how to accomplish life-with-dignity." The seminars were notified in city's newsletters to all households of the city which had a population of 420,000. The hall for the seminar could accommodate 250 participants, although there were 451 applicants this year for the seminars. On this occasion, a questionnaire survey was conducted among the participants in the seminars to see how deeper understanding of these issues affected the attitudes towards euthanasia and death-with-dignity.

Methods

The lecture included a role of medicine in health promotion, euthanasia based on a system of bioethical classification (7) and death-with-dignity. Death-with-dignity was defined by the author as "death when a patient accepts his/her death and all of people concerned with him/her accepts it and are satisfied with what happened". Patient-centered care and family-centered care, which give priority to the respect for individuals, were explained by using the example of preferences for cardiopulmonary resuscitation in fatal irreversible coma. Refusal of blood transfusion for members of a certain religious faction, even if medically necessary, was given as an example of the autonomy principle in medicine. The author concluded the lecture with the remark that death-with-dignity or life-with-dignity are entirely a matter of his/her own perspectives and wishes on health, life and death.

Questionnaire sheets were delivered to 249 participants two week before and collected when they came to the lecture. The second questionnaires were delivered to 228 participants when they left the room and collected one week after the lecture. These questionnaires contained the same questions except for the background profiles obtained in the first. Questions which were answered anonymously included the general concept of health and specific topics lectured on in the seminar (see the result section and appendix for each question). For the sake of comparison between before and after the lecture, unfamiliar contents such as the classification of euthanasia according to active/passive and voluntary state were not addressed in the questions. Although anencephaly was not mentioned in the lecture, questionnaires included how to deal with anencephaly upon explaining the condition and prognosis. Post-lecture questionnaires added how to respond to the request of euthanasia in a quadriplegic patient. Any comment was encouraged to be written down.

The percentages were calculated based on the total respondents. Figures may not sum to 100%, because not all respondents answered every question. Statistical analyses were done with the SPSS 6.1J software. As the patient's autonomy was described by the refusal of medically necessary blood transfusion in the lecture, tolerance of this refusal was selected as a dependent variable in logistic regression analyses regarding patient's autonomy. Covariates were entered to multivariate logistic regression analysis based on the likelihood-ratio when their significance was less than 0.1 in the univariate analyses.

Results

Backgrounds of Respondents: According to the post-seminar survey, 45% of the participants were deeply interested in this lecture which was rated the second most impressive talk among the 8 seminars. Numbers of respondents to this survey were 130/60 and 113/50 (male/female), which were equivalent to 76% and 71% in recovery rates before and after the lecture, respectively. Average age of the respondents (5312 years old, meanSD) were also identical both before and after the lecture.

22% of respondents were not satisfied with their health, and 63% of them visited doctors either regularly or occasionally. 80% went for health checkups regularly or occasionally. Only one person answered that health was not his concern. Of the respondents, 77% were very knowledgeable about euthanasia and 21% were somewhat knowledgeable before the lecture. The corresponding figures for death-with-dignity were 73% and 24%, respectively.

The results of univariate logistic regression analyses among the pre-lecture respondents indicated that those who allowed the refusal of medically necessary blood transfusion were more likely to wish for euthanasia (odds ratio 2.8 [95% confidence interval 1.7-68.7]), and less likely to accept (0.3 [0.01-0.5]) or wish for (0.2 [0.003-0.4]) death-with-dignity. The forward stepwise logistic regression analysis using these variables indicated that those who allowed this refusal were less likely to wish for their own death-with-dignity (0.2 [0.002-0.5]).

Pre- and Post-Lecture Comparisons: Numbers of respondents who wished to be more healthy were 83% and 64% before and after the lecture (2=17.5, P=0.00003, df=1). Those who wished to be more healthy practiced an average of 1.2 means/person to improve their health. The number of respondents who thought of "healthy" as "being without physical and mental diseases or disability" decreased from 40% to 31% after the lecture. At the expense of this decrease, the number of respondents who thought of "healthy" as "being fine" increased from 23% before to 30% after the lecture (2=7.7, P=0.4, df=8).

Table 1: Is euthanasia or death-with-dignity permissible? (Ns %s)

Patient's request: Before lecture; After lecture

Euthanasia with explicit request
Yes 76 (40) 68 (42)
Case-by-case 103 (54) 83 (51)
No 9 (5) 8 (5)

Euthanasia without explicit request
Yes 8 (4) 9 (6)
Case-by-case 140 (74) 114 (70)
No 31 (16) 31 (19)

Death-with-dignity with explicit request
Yes 103 (54) 93 (57)
Case-by-case 75 (40) 64 (39)
No 5 (3) 3 (2)

Death-with-dignity without explicit request
Yes 15 (8) 19 (12)
Case-by-case 137 (72) 119 (73)
No 24 (13) 18 (11)

There was no statistical difference between the data before and after the lecture.

Table 2: Would you wish for euthanasia or death-with-dignity?

Own preferences (Ns %s) ; Before lecture; After lecture

Wish for euthanasia
Yes 58 (31) 51 (31)
Case-by-case 109 (57) 89 (55)
No 18 (10) 20 (12)

Wish for death-with-dignity
Yes 82 (43) 84 (52)
Case-by-case 84 (44) 69 (42)
No 15 (8) 7 (4)

There was no statistical difference between the data before and after the lecture.

Table 3: Attitudes of respondents before and after the lecture regarding treatment of anencephaly

Possible interventions (Ns %s); Before lecture; After lecture
Take every measure 52 (27) 25 (15)
Give nutrition and hydration 10 (6) 9 (5)
Do comfort care alone 52 (27) 60 (37)
Give no assistance 1 (0.5) 0 (0)
Perform euthanasia 47 (25) 50 (31)


The attitudes towards euthanasia and death-with-dignity are summarized in Table 1 and 2. There was apparent difference in the attitudes depending on a patient's explicit request. The respondents answered that death-with-dignity was more acceptable than euthanasia. Their own wishes (Table 2) appeared to be more cautious than the answers to the general concept (Table 1). The lecture did not influence these trends except the wish for their own death-with-dignity.

Regarding the refusal of blood transfusion in the certain religious faction, 33% of respondents thought that transfusion should be enforced and 9% thought their wishes should be respected before the lecture. The corresponding figures were 26% and 17% after the lecture, respectively (2=6.3, P=0.09, df=3).

Table 3 summarizes the attitude toward anencephaly. Roughly the same numbers of respondents thought that an anencephalic baby should be put into life-prolonging treatment, comfort care, and euthanasia before the lecture. After the lecture preference of life-prolonging treatment decreased at the expense of the increases in comfort care and euthanasia (2=10.1, P=0.03, df=4).

The univariate logistic regression analyses indicated that the lecture was related to the decrease of the number who wished to be more healthy (0.6 [0.2-0.8]) and the increases of numbers who wish for death-with-dignity (1.4 [0.9-4.7]) and those who allowed the refusal of medically necessary blood transfusion (1.8 [1.2-11.2]). The forward stepwise logistic regression analysis using these variables indicated that the lecture related to the decrease of the number who wished to be more healthy (0.6 [0.2-0.8]).

Influence of Patient's Autonomy: The results of univariate logistic regression analyses using the allowance of the refusal of medically necessary blood transfusion among the post-lecture respondents are summarized in Table 4. The respondents who respected patient's autonomy were more likely to wish to be more healthy and less likely to wish for and accept euthanasia and death-with-dignity. The respondents who answered "case-by-case" to the questions regarding euthanasia and death-with-dignity without an explicit request showed variant results.

The forward stepwise logistic regression analysis using these variables indicated that the individuals who respected patient's autonomy were less likely to accept euthanasia with an explicit request (0.3 [0.01-0.4]). Other covariates did not show significant contribution in the multivariate analysis.


Table 4: Univariate logistic regression analyses of measures of patient's autonomy among the post-lecture respondents

Variables odds ratio; 95% CI; P

Wish to be more healthy
Yes 1.6 1.1-7.6 0.03
No 1.0

Wish for euthanasia
Yes 0.6 0.1-1.3 0.1
Case-by-case 0.6 0.1-1.2 0.09
No 1.0

Wish for death-with-dignity
Yes 0.5 0.1-1.2 0.08
Case-by-case 0.7 0.1-2.1 0.3
No 1.0

Euthanasia with explicit request
Yes 0.4 0.1-0.6 0.006

Case-by-case 0.5 0.1-1.2 0.08
No 1.0

Euthanasia without explicit request
Yes 0.7 0.1-3.2 0.4
Case-by-case 2.3 0.9-50.3 0.06
No 1.0

Death-with-dignity without explicit request
Yes 0.5 0.1-0.9 0.04
Case-by-case 2.9 2.0-66.0 0.007
No 1.0


The answer "No" was a reference category in each variable. Variables including age, gender, preference in cardiopulmonary resuscitation, attitudes towards anencephaly and quadriplegia were not significant.

Intra-group analyses were done to see the relationship among these variables. Female respondents tended to accept euthanasia and death-with-dignity with an explicit request more often than males (2=4.2, P=0.1, df=2 and 2=6.5, P=0.03, df=2, respectively). There was no difference in their own wishes for euthanasia and death-with-dignity between both genders. More female respondents tended not to want cardiopulmonary resuscitation and tended to allow the refusal of necessary blood transfusion than males (2=13.6, P=0.01, df=5 and 2=4.0, P=0.2, df=3, respectively). More female respondents tended to choose comfort care for anencephaly than males (2=7.0, P=0.07, df=3). Regarding to the request of euthanasia by a quadriplegia patient, 20% accepted, 16% rejected and 56% answered "case-by-case," which showed no significant relationship with gender and patient's autonomy.

Remarks: Comments were made by 7% and 13% of the respondents before and after the lecture. All of them showed sincere concern about end-of-life issues.

A 38-year-old female respondent was irritated with the question on anencephaly and noted "how dreadful to see the items in the question. Nobody except doctors raise such a "question" before the lecture. She wrote down after the lecture that "on respecting patient's autonomy and family-centered care, the question may be appropriate to be asked, although I can not make up my mind yet regarding this issue." A 40-year-old female disclosed that she had experienced the delivery of an anencephalic baby when she was a nursing student. A mother was kept away from the baby who received comfort care and died soon. She could not answer to this particular question.

Discussion

The seminar of the Inter College Nishinomiya consisted of a wide variety of topics on "life" from literature to medicine. Therefore, the participants probably had a broad interest in "life," not necessarily in life in a medical sense. It is conceivable that the present respondents were biased to the opinions as compared with lay persons in Japan. Thus, many of the respondents had a certain knowledge of euthanasia, while they wished for unlimited health like many other Japanese before the lecture. This might be the reason why notions on euthanasia and death-with-dignity showed only minimal changes whereas the number of respondents who wished to be more healthy decreased significantly after the lecture. These findings suggest that the lecture attained its primary objective, although one-way transfer of knowledge as occurs in a lecture might be unavoidable limitation for deep understanding of these issues.

The present results revealed that many of the participants changed their notions on health. Esteem of patient's autonomy may be indicated by the increase of the number who allowed the refusal of medically necessary blood transfusion in the certain religious faction. Since supportive care is thought to be the choice in anencephaly (8), emphasis on comfort care in anencephaly might also be anticipated after the lecture. However, there were several unexpected and unreasonable findings. For example, the pre-lecture respondents who allowed the refusal of medical intervention were less likely to accept or wish for death-with-dignity. And the respondents who respected the patient's refusal of medical intervention tended to wish for euthanasia before the lecture, but they were less likely to wish for and accept euthanasia and death-with-dignity after the lecture.

The end-of-life issues including euthanasia primarily stem from patient's autonomy (9,10). Thus, it might be assumed that individuals who respected patient's autonomy would also accept euthanasia and death-with-dignity. Some of the attitudes of the present respondents were along this line, but other results were opposite in this regard. There are several possible explanations for these puzzling findings. First, the present respondents are a selected group. However, the present findings concerning euthanasia and death-with-dignity were not greatly different from others. For example, the latest media survey in 1996 showed that euthanasia was wished for by 26% of the respondents (11). Second, the ambivalent findings could have been mere coincidence because of survey-to-survey variation. This is unlikely either, since other trends were similar and reasonable in the pre- and post-lecture respondents. These trends seem to eliminate the third possibility that the lecture simply confused participants or the ambiguity in questions caused the conflicting findings between patient's autonomy and preference in euthanasia. In this regard, the changing attitude of the respondents toward euthanasia is noticeable, which is related to the next most likely explanation for the present findings.

The respondents who respected patient's autonomy also wished to be more healthy. Permitting refusal of necessary medical intervention appears to conflict with the wish to be more healthy. However, it has been known that personal experiences of illness significantly lead people to attain the idea of patient's autonomy (12). Therefore, if they experienced illness and had the chance to think of the autonomy principle more seriously, they would become to respect patient's autonomy while they wished to be more healthy. This may be the reason why this relationship was found only in the post-lecture respondents. Thus, permitting the refusal of medical intervention might not be an expression of respecting patient's autonomy in the pre-lecture respondents. On the other hand, the participants to this lecture learned the autonomy principle. Yet in contrary to the anticipation for the association of patient's autonomy and euthanasia, the post-lecture respondents who respected patient's autonomy were less likely to accept euthanasia with an explicit request. There was an association of the acceptance of patient's autonomy and the response of "case-by-case" in decision-making for the general idea of euthanasia and death-with-dignity without an explicit request in the post-lecture respondents. These findings seem to suggest that these people would not include the autonomy principle in their decision-making, although it needs to be supported by further study. In any case, these observations indicate that currently the social acceptance of euthanasia is not based on the autonomy principle in Japan. Presumably, the acceptance of euthanasia is likely to stem from a form of mercy-killing as part of cultural or historical background (4).

The attitudes towards end-of-life differ considerably among countries. For example, 16% of Japanese doctors have been requested euthanasia from patients (2), whereas 38% of American and 88% of Dutch doctors received this request (13,14). Even within the same country, attitudes toward euthanasia differ over time as well as depending on their social, cultural and religious backgrounds (15). These personal backgrounds and experiences were also known to affect the notions towards the autonomy principle (12). Thus, the relationship between acceptance of euthanasia and the autonomy principle should be studied further using more sophisticated contents as to what extent "final autonomy or ultimate right" is contributory in decision-making regarding euthanasia in Japan. Perhaps, international study may give more insight into these issues of the autonomy principle, death-with-dignity and euthanasia. In the meantime, open discussion involving moral, ethical, social and also legal aspects is essential for deeper understanding of these complex controversial end-of-life issues which face every person.

Appendix: questions and items for respondent's choice
1. Are you interested in your health? Yes, Yes somewhat, No
2. Are you satisfied with your health? Yes, Yes somewhat, No
3. How often do you visit doctor? Regularly, Occasionally, None
4. How often do you go to health checkups? Regularly, Occasionally, None
5. Do you wish to be more healthy? Yes, No
6. What mean(s) do you perform for health promotion? Consulting doctor, Taking vitamins and other drugs, Trying alternative medicine, Exercise etc. other than drugs, Other (open-ended)
7. What do you mean by "healthy"? Without physical disease or disability, Without mental disease or disability, Without physical and mental diseases or disability, Without physical, mental or social problems, Feeling healthy regardless of physical or mental disease, No need of doctor, No need of drugs, Being fine, Others (open-ended)
8. Do you have enough knowledge of euthanasia? Yes, Yes somewhat, No
9. Do you have enough knowledge of death-with-dignity? Yes, Yes somewhat, No
10. Should blood transfusion be enforced against one's religious belief if medically necessary? Yes, Case-by-case, No, Do not know
11. With what mean(s) would you wish to be treated when you were near death with fatal illness? Every possible means, Cardiopulmonary resuscitation, Artificial nutrition and hydration, Antibiotics, None of these, Leave the decision to surrounding people
12. How would you respond to the request of euthanasia by a quadriplegia patient? Accept, Case-by-case, Reject, Do not know
13. See the results and tables for the questions regarding euthanasia, death-with-dignity and anencephaly.

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