Attitudes of university doctors to the use of advance directives and euthanasia in Japan

- Darryl Macer (1), Takashi Hosaka (2), Yuki Niimura (1), and Takayoshi Umeno (1)

1. Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City 305, Japan.

2. Department of Psychiatry and Behavioural Science, Tokai University School of Medicine, Bohseidai, Isehara, Kanagawa 259-11, Japan.


Eubios Journal of Asian and International Bioethics 6 (1996), 63-69.
Abstract

This paper reviews the results of a pilot study also conducted in the United States, Germany and Chile, the physician decision-making survey of Rothenberg et al. (1996) of the Volkswagen Foundation-Kennedy Institute project. The views of university physicians caring for adult patients at an academic medical center concerning advance directives were surveyed. Given a case, almost all respondents chose the option the doctor and family decide the treatment for the demented patients. The process used to decide which person to discuss the treatment was a mixture of relatives and those caring for the patient, and those in the family who have the best ability to decide. The most important factor in making the decision was what is considered best for the patient, followed by the family will.

Introduction

The subject of death is a sensitive one in all cultures, and there have been discussions over the use of life-support systems in Japan as in other countries (Lock, 1995), which still continue. Advance directives are being implemented in hospitals in the USA but seem to be having little practical effect according to some (Glick, et al. 1995). In Japan a Special Committee of the Science Council made a declaration about the terminal care of patient in 1995, including the admittance of the withdrawal of foods from PVS patient under the name of death with dignity (Fukuma, 1995). Do-not resuscitate orders are occasionally used (Fukaura et al., 1995). The issue is clouded by extreme claims such as that some Japanese doctors seek financial rewards that can be obtained by continuing treatment longer (Lancet 346 (1995), 970-1). This paper presents the Japanese results of a survey of physician attitudes about the use of advance directives.

Sample and Methods

Most of the questionnaire was taken from a pilot survey also conducted in the United States, Germany and Chile, as reported elsewhere (Rothenberg et al. (1996). The physician decision-making survey of Rothenberg et al. (1996) of the Volkswagen Foundation-Kennedy Institute project was circulated among university physicians in Japan, together with a supplementary double-sided survey on bioethics and euthanasia, in May 1995. A total of 133 responses were returned (47% response rate), of which 86 were physicians caring for adult patients at an academic medical center who were asked to complete the advance directive questionnaire.

A total of 300 questionnaires were posted, including 93 inside the University of Tsukuba, and 197 to other doctors in university hospitals in Japan (including 137 members of the Japan Association of Bioethics). From the 207 questionnaires sent out, 3 had the wrong address, making the sample size 204 outside of Univ. of Tsukuba, and from these 113 responded (55%). Gift pen and pencil sets provided by L. Rothenberg were included to try to increase response rate. From 93 inside the University of Tsukuba, 4 had the wrong address, making the sample size 89 inside the University of Tsukuba, and 19 responded (21%).

Questions 1-9 are taken from the demographic page, and the remaining questions from the non-U.S. survey, of the questionnaire by Rothenberg et al. We also appreciate the advice with translation of the questionnaire of Ms. Masami Sasao, Prof. Gen Ohi, and Mrs. Nobuko Macer. The results were calculated using Statview software in MacIntosh. The main ideas in the open comments were placed into idea categories, and the results are summarized in the Tables below, using the approach of Macer (1994). The complete English translation and Japanese comments files are available to those who want to see the depth of responses. The results from the accompanying survey on bioethics have been reported in the last issue (Macer et al. 1996).

Results

The results are calculated for the 86 physicians caring for adult patients at an academic medical center (Q1), which represent 65% of the questionnaires returned. Some respondents did complete the second questionnaire on euthanasia and bioethics, but the analysis is only presented for the sample of 86 physicians. 100% received there medical training in Japan; 86% were male. 7% were born in the 1920s, 21% in the 1930s, 12% in the 1940s, 24% in the 1950s, and 36% in the 1960s. Therefore we had a young sample of doctors, as seen in the graduation years: 2% graduated in the 1940s, 17% in the 1950s, 15% in the 1960s, 14% in the 1970s, 33% in the 1980s, 19% in the 1990s.

The patient situations were examined in Q7-9. In last 12 months 9% of physicians had seen 0-99 different patients, 35% had seen 100-199, 36% had seen 200-499, 20% had seen more than 500. 56% said less than 2% had died, 16% less than 6%, 8% less than 10%, 2% said 20, and 1% said 30% had died. The percentages of patients for whom the treating doctor is the primary physician were:

From 0 (>) to 10 (<=) 18%
10 20 9%
20 30 2%
30 40 1%
40 50 9%
50 60 5%
60 70 12%
70 80 12%
80 90 11%
90 100 7%

The Proportion of patients in the following three age groups:

From(>) to (<=) <40 yrs 40-70 yrs >70 yrs
0 10 22% 6% 21%
10 20 27% 4% 25%
20 30 18% 11% 18%
30 40 11% 24% 18%
40 50 11% 26% 7%
50 60 2% 16% 2%
60 70 1% 9% 0%
70 80 1% 5% 0%
80 90 2% 0% 2%
90 100 0% 0% 2%


Case scenario for advance directive question:

A 68 year old gentleman with a rapidly progressive dementia is brought to your office with pneumonia. This dementia has been fully evaluated and is both progressive and untreatable. He has worsened over the past year and now is able only to state his name, recognize family members and respond to simple commands. He is incontinent and bedridden and is unable to complete any activities of daily living; he must be fed, dressed, bathed. He appears to be in no pain. Now he has had cough and fever and shortness of breath for 3 days. Examination, laboratory findings and X-ray pneumonia affecting both his lungs.

You have three options: (1) admit the patient to the hospital for intravenous antibiotics with an expected 80% chance of survival, (2) prescribe oral antibiotics for the patient to take at home with an expected 40% chance of survival, or (3) give no antibiotics and prescribe medications such as acetaminophen and cough suppressants to make the patient comfortable with an expected 5% chance of survival. The patient was a bank executive but has not worked in one and a half years. He lives with his wife who cares for him and has two grown children with whom he is close, a daughter, the elder, and a son, both of whom are married and live nearby. He had not told you in the past what type of care he would want in a clinical situation such as this. The patient's wife and children are all willing and able to communicate with you.

Q10: Who makes the decision to treat a demented patient (example given).
1 doctor-no talk 0%
2 doctor-inform family 1%
3 doctor/wife 2%
4 doctor/son 0%
5 doctor/daughter 0%
6 doctor/children 0%
7 doctor/family 94%
8 impossible to say 2%

Q11: How to determine who is the appropriate person to discuss medical treatment issues?
(Up to three reasons per comments, %'s)
Reason
Not stated 9%
Case-by-case 1%
Patient first 2%
Patient & family 10%
Patient and closest 1%
Decide after talking 9%
Closest person 19%
Closest family 13%
Carer 12%
Best ability to make decisions 13%
Leader of family 9%
Relatives 9%
Spouse only 2%
Spouse first 6%
Spouse and children 10%
Children 3%
Conditional 1%
Parents 1%
Specialist 1%

Q12: What decision do you make?
1 Admit in hospital 96%
2 Drugs at home 4%
3 No antibiotics 0%

Q13: Rank the importance of following factors in making the decision (fixed options - %'s).
Columns across page: factor; very important; important; not important;
1: Chance of 6 month survival 54 35 11
2: Functional status 42 50 8
3: Diagnosis of dementia 25 56 19
4: Age 19 50 31
5: Gender 0 12 88
6: Socioeconomic status 0 44 56
7: Anticipated costs 9 61 30
8: What patient wants 68 28 4
9: Family wants 84 16 0
10: Best for patient 94 6 0
11: best for family 60 40 0
12: best for society 5 50 45

Q14: If there was a law, would you follow patient's preferences after dementia?
Yes 87%
No 11%
Neither 2%

Q15: Would you ask the proxy that was written in the document to help make the decision?
Yes 95%
No 4%
Neither 1%

Reasons given for Q14; and Q15 (%'s)
(Ideas were assigned into up to 2 categories per comment)

Not stated 4 9
Depends on case 6 2
Patient's right 25 15
Respect patient's will 35 48
In my case too 6 4
Laws to be obeyed 16 12
Medical costs important 4 0
Consider medical situation 7 2
Patients will is difficult 1 0
Exceptions to patients will 4 5
Past decision could be bad 2 0
Family will 5 2
Trusted 3rd party 0 6
Don't understand 2 0
Doctors should decide 1 1
Doctors interest 2 0
Other 2 5
Against law 0 1
Not positive euthanasia 1 0


Bioethics Survey on euthanasia case

Q6a: Consider that you have a 56 male patient with multiple myeloma, with less than 3 months anticipated survival. He usually seems to be sleeping because of being given morphine for severe pain. His family often asks to make him more comfortable when the patient complains of severe pain. The patient did not talk what he would have wanted in such a situation, nor has he talked about it with you. What would you do for him?

19%: non-opioid narcotics, because morphine could have severe side effects
61%: increase dose of opioid after explanation to family that it may shorten his life
3%: increase dose of opioid with no explanation
5%: give some other drugs even if they may shorten his life
12%: other
N=14 made comments, N=63 did not.

Q6b: If the patient talked about death with dignity a lot before. If, after talking with his family, you and his family agreed to dignified death, what would you do?
8%: non-opioid narcotics, because morphine could have severe side effects
66%: increase dose of opioid after explanation to family that it may shorten his life
2%: increase dose of opioid with no explanation
14%: give some other drugs even if they may shorten his life
10%: other
N=12 made comments, N=65 did not.

Q7: What is your opinion about death with dignity and euthanasia? (N=79)

Not stated 19%
Don't know 0%
Patients will 13%
Dignity & natural death OK 9%
QOL considerations allow death with dignity 6%
Talking is important, and for patient to think 3%
OK with conditions 6%
Rejects euthanasia but death with dignity OK 16%
Pain control 5%
Need social discussion & controls 14%
Family & patient to decide 3%
Doctors decision 3%
Rejects death with dignity & Euthanasia 4%
Sanctity of life 1%
Document or 3rd party are useful 10%
Difficult 1%
Other 9%

Discussion

The decision-making survey found the almost all respondents choosing the option the doctor and family decide the treatment for the demented patients (Q10). The process used to decide which person to discuss the treatment with is shown in Q11, to be a mixture of relatives and those caring for the patient, and those in the family who have the best ability to decide. Although this response suggests joint decision-making, this survey does not examine how the family views the discussion with the doctor, and whether they feel able to reject what the doctor suggests.

Q13 listed the importance of various factors in making the decision, and most important was what is considered best for the patient, followed by the family will. Significantly lower was the option of what the patient wants, and what is best for the family. If there was a law (Q14) only 11% would not follow the patient preferences, and the naming of a proxy in a document (Q15) would mean 95% of the doctors asked that person to help make the decision. The reasons given to support Q14 and Q15 were largely respect for the patient's right or will (a little weaker), followed by reference to obeying laws.

Comparisons to the surveys in the other countries are limited by the smaller number of respondents in the other countries, USA (N=72), Germany (N=28), Chile (N=26), and the fact that these were convenience samples rather than national surveys (Rothenberg et al. 1996). The Japanese physicians had seen less patients than the other countries, but similar age distributions were seen. More Japanese physicians said that they would make the decision together with the whole family than the other countries, consistent with a more family-centred practice of medical decision-making. Given the case scenario of Q12, significantly more Japanese physicians said that they would admit the patient to the hospital than in the other countries, suggesting that Japanese medical practice is more centred around the hospital than in the other three countries. However the weighing of factors in the treatment decision (Q13) was generally similar in the different countries.

In response to Q14, 89% said that they would follow the patient preferences in an advance directive if required by law, even if it was different to their own. This was higher than in Germany and Chile, and Japan was similar to the US sample. The clinical scenario that was used in these survey was one way to help investigate cross-cultural differences, and similarities in medical decision-making. However, there were generally greater differences within each sample then between, as has been found in surveys of the public and medical students about bioethics (Macer 1994).

Patient preferences can be respected only if they know the truth, and can make an informed choice. Japan has the second highest suicide rate as among elderly persons in the world, next to Hungary, suggesting that older people may not be so content. A survey in Japan by Yomiuri Shimbun (3 Sept 1994), 1,16-18, of 2064 persons looked at questions on terminal care. Asked the question, if you had cancer would you like to know, 64% said yes and 29% no, whereas if it was to tell a family member they had cancer, 25% said they would tell, and 58% said they would not. Asked where they would like to be treated for terminal disease, 38% said at home, 32% said hospital and 30% said a hospice. The hospice was especially popular among younger persons, under 40 years, but a hospital was more popular among older persons. A paper investigating patient attitudes to truth telling found patients were more positive to knowing the truth than the general public (Tanida, 1994). However, only 13% of doctors in Hyogo College of Medicine reported telling the truth to patients with cancer that joined in a population screening health check for cancer, however in the Annual Japanese Cancer Society meeting held in October 1995, another survey found 50% of doctors tell the truth. In the process of changing attitudes to truth telling, the proportion probably depends on hospital location most.

While the concept of informed consent is growing in Japan (Annas & Miller, 1994; Morikawa, 1994), there are still some traditional barriers which slow its spread (Hoshino 1995). The full concept of a patient right to an informed choice has been rejected in the supreme court in Japan (Lancet 345 (1995), 1166, 1176). There continues to be a lack of trust in many doctors (Macer, 1992), something also seen statistically in the results of surveys (Macer, 1994).

Q6 presents another clinical scenario, and shows that there is considerable support for prescribing opioid drugs in Japan, which is interesting given the history of infrequent use. Q7 found a mixed reaction, with many calling for social discussion. These questions were designed in light of the recent Tokai University euthanasia case, which was decided on 29 March, 1995. There has been increased debate in Japan on euthanasia ever since this recent doctor's actions were made (Hoshino, 1993).

In Japan the Tokai University active euthanasia case decided, at the Yokohama District Court, that the doctor was guilty; Japan Times (29 March 1995), 1, 2. The doctor was given a suspended sentence, for delivering potassium chloride to kill a patient. The Presiding judge outlined four conditions which must be met for euthanasia:
1. patient must be suffering unbearable physical suffering;
2. must be expected to die soon;
3. must have expressed a clear wish to have his life shortened; and
4. there must be no alternative treatment available to relieve the patient's suffering.

The 2 year suspended sentence was given because the doctor had been repeatedly asked by the family, and because of the lack of terminal care in Japan several years ago. The judge outlined these conditions, which are similar to a 1962 Nagoya Court ruling. Some doctors would have preferred the judge to also suggest the most ethical method. The case may have led to increased use of morphine, and better terminal care.

This paper is only a brief review of the results of this pilot study, but it provides some picture on the views of Japanese physicians towards advance directives. University physicians may be more likely to support truth-telling and advance directives than country doctors, however, it may be said that the practice of end of life decision-making is more open in the university hospital than in smaller private clinics. Whether or not advance directives are introduced into Japan more than now, the wider discussion of the issues should led to improved communication between doctor and patient and the family.

References

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Fukaura, A. et al. "Do-not-resuscitate orders at a teaching hospital in Japan", NEJM 333 (1995), 805-7.
Fukuma S; [Bioethical issues relating to patients in a persistent vegetative state]. [Bioethics] 5(1), 31-35 (1995) (in Japanese).
Glick, H.R. et al. "Advance medical directives in US hospitals and nursing homes: The implementation and impact of the Patient Self-determination Act", Politics & Life Sciences 14 (1995), 47-60.
Hoshino, K. "Euthanasia: Current problems in Japan", CQHE 2 (Winter, 1993), 45-7
Hoshino, K. "Autonomous decision-making and Japanese tradition", CQHE 4 (1995), 71-4.
Lock, M. "Contesting the natural in Japan: Moral dilemmas and technologies of dying", Culture, Medicine and Psychiatry 19 (1995), 1-38.
Macer, DRJ. "The 'far east' of biological ethics", Nature 359 (1992), 770.
Macer DRJ, Bioethics for the People by the People, Eubios Ethics Institute, Christchurch, 1994.
Macer D., Niimura, Y., Umeno, T. & Wakai, K. "Bioethical attitudes of Japanese university doctors, and members of Japan Association of Bioethics", EJAIB 6 (1996), 33-48.
Morikawa, I. "Patient's rights in Japan: Progress and resistance", KIEJ 4 (1994), 337-43.
Rothenberg LS, Merz, JD, Wenger NS, Kagawa-Singer M, Macer DRJ, Tanabe N, Fukuhara S, Kurokawa K, Fuenzalida-Puelma HL, Figuueroa P, Meran JG, Bernat E & Hosaka T. "The relationship of clinical and legal perspectives regarding medical treatment decision-making in four cultures", Annual Review of Law and Ethics 1996 (In Press).
Tanida, N. "Japanese attitudes towards truth disclosure in cancer", Scand. J. Soc. Med. 22 (1994), 50-7.


Appendix: Open comments

Q11

1 Case by case.
2 At first we will have a talk with patient's wife with the consideration of her health and mental condition. Next we will try to get comprehension and cooperation from his daughter and son including their spouse.
4 Patient and their family.
5 Patient and their family.
6 With patients, if patients could control themselves. If the treatment takes longer time and the family is involved, the family also takes part in making decision.
19 Patient's family. (Family member who lives together or who lives near. Adult in a sense of a person with discretion.)
20 A person who lives with the patient, a person who cares about the patient most, of course the patient themselves can be involved in the decision if it is possible to contact with them.
22 Look for a key person among a spouse or a family.
24 I suggest one who accompanies a patient(probably a spouse) for having a consultation and let the family to choose participants for a consultation. (Including an attendance of wife, daughter and son or other members if the family wishes to.)
27 Relatives that are close to the patient (e.g. spouse or children). Persons who are involved in some ways to the condition of the patient.
30 Direct parents or etc.
33 Someone who does a practical care for the patient. Someone who is a spokesperson for the patient (who's sharing profit).
35 Focus on a patient themselves and a patient's will unless they have a malignant disease. Also consider a spouse and their children's opinions. (If the number is limited, someone who spends time with a patient most should be chosen.)
37 Basically a spouse, then their children. However if there seems to be some trouble between a spouse and children, it is necessary to talk with both of them. If a spouse is not appropriate, children should be the main to be involved.
38 I assumed that this question is asking the method to find the key person. Who seems to be a leader in the conversation between family and a doctor will be considered as a key person.
39 Decide a person to talk with after talking with them.
40 All family members who want to join, come to hospital and who can get in touch with.
41 1: The first, the patient themselves. 2: The second, the relatives in the first degree in law. 3: The third, the close relatives in daily lives.
46 At first, talk to the patient themselves with scrupulous care not to worry them. Then make a chance to meet a cooperative person who knows the patient well (usually a spouse or children), and talk to the patient and the cooperative person. Then, talk in detail with the cooperative person only and think about the way to support the patient. Even if the patient has dementia, when you look at them carefully you would often notice how they feel. In the case it is impossible to know, I would decide what to do by taking with the family only.
48 Someone who is related to the patient most.
49 I would decide the wife who lives with him as a key person.
50 By considering the relationship with the patient and patient's will.
51 I would talk to a person who understands the patient most as a leader and all others who have eager to support the patient.
53 If it is necessary to catch the patients' will certainly, I would choose any person to consult with. Special doctors who have a lot of experiences and more knowledge than me are included.
54 Person who has been taking care of and still continues to, moreover the person who is considered legally reasonable.
57 Those who share daily life with the patient.
58 In Japan all family members' approval is valued much more than an individual's decision. It is different to choose only one proxy.
59 Person who understands person's will well, could make decisions and also has responsibility to the care towards the patient.
61 Usually I would consult with the patient and the family (adult only). In this case, the patient is considered to lack the ability to decide, so I've chosen the above choice.
62 Consulting in practice.
63 The patient and the family.
64 I would decide with the family members who has most responsibility towards the patient and could seriously consult on the treatment, yet the members could only one or more.
65 1 Relatives who are living together. 2 If it is impossible to get the understanding from the relatives living together, then with the children.
66 This depends on the recommendation by patient's family.
75 All family members is the rule but try to find out the key person, who has the ability of decision-making and the leadership, as soon as possible in order to integrate the opinions with that person as leader.
77 The patient themselves and the family (patients, wife or husband and children in that order).
79 A person with no mental problem and not emotionally confused.
80 A blood related to the patient.
82 The person who most cares about the patient and also who would not be influenced by the feeling and has high intelligence.
83 In the case of a home care or an attending care, with the person who actually attends and the person who is recognised as appropriate by the attending person.
84 A spouse, immediate relatives or a relatives living together who comprehends the patient's feeling and who has benefits matched with that of patient.
85 If the wife is well enough and psychically normal, I would consult 50-80% with her and then I would take 30% of the children's opinion into account.
88 I would choose a wife or a person with sense who could be a leader to consult with.
90 With the person that the patient trusts and could leave everything to.
91 If there is understanding, with a patient and a family. If a patient does not have understanding, then with a family. If there is no family, then with a guarantee.
92 Someone who can think about the patient objectively.
94 Someone in the family who understands the disease and able to work in cooperation.
95 In principle, a spouse and all children will be the key persons.
96 Firstly, ascertain the key person for a patient (someone whom the patient depended on and trusted most). Then, approach the person to make sure.
97 Relatives who have lived closely to the patient most (yet they have to be adults and should not have any mental diseases).
98 Someone who would understand and sympathize most with what is discussed.
99 Someone who lives closely and takes care of the patient most. -----the spouse who lives with the patient
100 A person who has come to have the best mutual understanding towards the patient.
101 The key person will be a relative who has taken care of the patient (the spouse). Give a decision according to the patient, his spouse and close children as further key persons.
102 Someone who knows the patient most.
103 Someone who usually makes a decision in the family.
104 A spouse.
105 1) Someone who is responsible according to the law. 2) Someone who helps the patient financially mentally in practice.
106 Someone who is positive in consultation and also comprehends it.
107 The patient themselves and relatives.
108 Someone who is most close to the patient.
109 Family members who usually could have good communication to come to an understanding with the patient.
110 If it is impossible to consult with the patient, then with the family members who usually take good care of them.
111 The patient and the family.
112 1) The person who can take care the patient and solve the financial problems such as a payment for the care. 2) The person living with the patient. 3) Family (not the person living together). 1,2 and 3 is the order.
113 Meet each of them and decide the one who has the highest position in the family.
114 Examine a person whether he or she is close to the patient and then decide.
115 Before deciding a treatment, I would like to explain the present symptoms. From an impression of family members, while explaining, I would choose a person who has the best leadership to decide whom I should consult with. I mean whom I should let join consultation with me.
116 Who has a sufficient sense, who is not driven by a emotion and could tell a sufficient explanation to other family members. If a wife is quite old, then try to choose a child who is most close to the patient.
117 A person who is close to the patient.
118 First, a spouse. Yet if a spouse is quite old and children are financially independent, then children are also positively included. If there are some close relatives living near and hope to be included, they are also welcomed. I would not limit the person if there is no special reason to limit.
119 Relatives, person living together, person who knows the patient's view and has sense and person who is going to take care of the patient hereafter.
121 Including a spouse and children, I would consult with people in close relationship to the patient's condition and consider opinions from other relatives.
122 Basically I would talk to a spouse. If a spouse is absent or does not possess enough comprehension to what I say, I would talk to their children.
123 A relative who spends daily life with a patient most.
124 I talk to a spouse of a patient and their children.
126 A spouse and their children.
130 A person who has stayed with him. A person who has been looking after him.


Q14 (Y=Yes; N= No; NR=No response; ?= Don't know)
1Y It depends on the cases whether to follow the laws, etc. 100%. There may be cases such as where the decision had been made along time ago or clearly in the wrong way.
2Y We'd better respect patient's right of self-decision.
4NR Contents of laws are obscure, therefore not able to answer. Patient's will is also obscure.
5NR This is not the question to be asked with a "yes" and "no" form. I'd like to respect patient's will, but there must be excepted cases. It's the personal problem above respecting of individual will.
6Y Would like to respect personal will. (The ratio of people who show extreme will is presumed small.)
12Y We should introduce an idea of self-decision to medical treatment. I think the degree of burden in medical expenses would increase in a future.
19N I do not think laws, policy and regulation would be established. I do not think that only patient's choice always has the right to decide. The treatment is established only if doctors reflect their leadership as a specialist.
20Y Considering a coming society composed largely of elderly people, we, Japanese, need to prepare for when we would not be able to express our will. This should be done from the perspective of medical expenses within the nation. Yet I do not think the patient's choice is everything, I consider they needs to talk with their family.
22Y High satisfaction can be gained from following the patient's will.
24Y I think the final decision-making authority for the method of treatment should be in hands of the patient themselves(according to the general rules).
27Y The right to decide the treatment belongs to the person.
30Y To respect for the patient's living will.
33Y Laws exist to be obeyed.
35N Prognosis differs from disease to disease and also as in this example there are combinations of various diseases. I would respect patient's will, yet opinion from family and medical view points should be considered in order to choose treatment.
37Y Patients should estimate in the right way advanced circumstances of medical treatments. Yet what is important for human is personal will and a doctor should support it as a professional.
38Y To respect the right to self-decision making.
39Y It is a principle to decide their own problems by themselves.
40Y Patient's will must be most respected.
41Y Considering from an essential medical service. then I would determine in this way.
43Y We consider that the patient has spoken to their family beforehand. However it should be carried only if we could judge. Their will has not changed by environmental condition and others.
46Y How to live and how to die are the human rights which should be decided by the patient themselves. Yet if possible, we would re-confirm the patient's will when the circumstance actually comes.
48Y If the patient has decided before hands what kind of treatment he would like to have, we should follow what he has wished to.
50N Case by case. Basically I would answer "yes". However we should think about the decision in a case which the patient has no ability of self-decision.
51Y I would not wish an active treatment when I become dementia.
53Y I would like to respect the will of the patient who had decided independently.
54Y It is natural to submit the law as a general rule. Yet, if I think and believe to myself that there is some problems in law, so I prefer to consult with the family.
57N There is almost no assumption of self decision (?) more than choosing the death with dignity.
58Y We should respect person's will. Yet, we should not do positive euthanasia.
59Y Patient's choice should be informed sufficiently and the choices of the treatments must not be changed. Moreover, the patient's will or choice must not be changed. It is important that the choice agrees with the actual circumstance of medical service, if these were cleared I would say "yes".
61Y Person should decide their own life.
62Y I believe this is the best way.
63N The treatment is possible to change because the progress and the situation of medical science changes.
64Y 1. Choice of the means of the treatment should be made by patient. Medical team, especially the doctor, need to explain the treatments and its efficacy in order, but doctor is not the one to decide the choice. 2. Reconsidering is needed if the patient could not make a decision on precise treatments, the treatment has changed over time or the efficacy of the treatment has greatly changed.
65Y Justly before making a choice, I would consult the patient and the family sufficiently, then try to make a document on the choice and give the treatment.
66N There still lies the possibility of a change in the patient's decision, I would prefer to counsel over again in that situation.
70 Neither: This depends on how the patient and the family recognize the content.
75 fundamentally Yes and exceptionally No: It is as a matter of course to obey the law, if it is established. Yet on the process of establishing the law, a patient should be given sufficient information and I would also try to make them write expressly that the term of validity should be short and if the prognosis changes by the development of medical science, leave a matter to the doctor's discretion.
77Y 1) I would respect the patient's will as a rule, yet I am not going to select 3) as a treatment in this case. 2) Although selecting a treatment in healthy condition, one should consult with an adequate doctor.
79Y The treatment that will be given to them could be chosen by themselves.
80Y I think this should be the way it is.
82Y I think the patient's will is most important if the patient surely catches their condition and then chooses the treatment.
83Y I also want to do like this.
84Y The most important thing is the choice by the patient.
85Y I also want to have a right to decide myself.
88N I want to judge after considering the will of family.
90Y Life and the rights for choice belong to the patient.
91Y I would respect the patient's will.
92Y This is because it is a patient's idea.
93Y The decision made by the patient is important.
94?: It depends on the situation.
95Y Because a decision made by a patient is the most important.
96Y It is often considered that today's medical service puts move weight on the decisions made by the doctor's side than the opinions of a patient and their family especially when the disease the patient has is malignant. This is because the doctor is a professional of that field and the patient is just an amateur. Therefore the patient does not have much knowledge about a disease including its treatment, process, etc. Also there is a tendency to recommend a treatment from referring to the current idea. However after all it is a patient who gets a treatment and suffers in many ways. Therefore I think the patient should be able to decide their treatment.
97Y I think it is a basic human right.
98Y I think the patients have a right to decide their own lives.
99Y I think the patients have a right to decide their own treatment. Yet I would refer the opinion of the family and choose the method which is considered to be the best in the current condition.
100Y To submit the law and from the viewpoint to respect the patient's will (yet, I still find doubt whether the treatment is medically best in that moment, because medicine develops).
101Y One's life is not a thing to be decided by others.
102Y I would like to decide the treatment I will get and its result by myself.
103Y To respect the patient's will.
104Y The patient's will should be respected.
105Y Because I think medical care is something based on patient's will or needs, and is done in the frame of social mutual agreement. In Japan: in order to fulfill these three conditions, 1) patient's rights for self-decision making, 2) social mutual agreement as it ought to be and 3) a system to guarantee 1) and 2), we have to overcome considerable operations.
106Y I would like to do so if I were a patient.
107Y The patient's will should be respected.
108Y If it is decided by law, I will obey.
109Y I believe the treatment that the patient could consent to is the best one.
110Y If the patient's will does not match with the family's, then in some cases, I would give precedence to the family's.
111Y To respect a law.
112Y I want to respect patient's rights to live and to die.
113Y I would respect the spirit of laws.
114Y I think the patients have a right to decide their treatment by themselves.
115Y If this case is similar to what the patient has imagined and they already has chosen the way to deal, I think it better to follow it. Yet if the situation differs from what the patient has predicted, then I also include other factors as one of opinions to refer for consideration.
116Y In Japan, the old is also treated extremely, so in future a choice for a treatment should be left to the patient themselves. Also I feel difficulty in judging whether a patient with a cancer in terminal stage wants a chemical treatment, because the notification has not been done.
118Y The strongest right of decision making belongs to the patient themselves.
119Y I do not possess a belief strong enough to break a law.
120Y I would try to submit the choice made by the patient, yet there still lies the possibility to change depending on the situations.
121Y If, actually, that kind of right for decision making is established, I think we must submit to it. Yet depending on the case, if we also include a question touching humanity, there lies big difficulty when a choice should be made.
122Y I think medical service is basically a balance between the patients themselves and medical side.
123Y I would like it to be done this way, if I were a patient.
125Y Because a patient's will is not most important.
126Y A patient life is a life of themselves and not of others. So I would follow a patient's choice.
130Y Basically the life of a patient is the life of themselves. By following a choice made by the patient, it is possible to avoid a life prolongation with unnecessary pain, and unless medicine and money for examination which accompany with it. Also it is possible to send the money to other useful area such as a caring (institutions and services).
131Y We should introduce the idea of self-determination move to the area of medicine. I think there will be an increase of self-sharing in medicine in future.
Q15
1Y Same as Q14.
2 Neither: Nominating a proxy is a important issue. There is a possibility of change of proxy after nominating, so we'd better be prudent not to establish laws easily.
4Y Patient's will should be respected as much as possible.
6 Because of the patient's will. But if the will is considered to be arbitrary and one-sided, I prefer to suggest the better choice to their situation. (If needed, family and others are involved.)
12 To let the patients decide themselves.
19 It is out of consideration that the person would be designated in law by patient. Law of doctors and treatments in Japan would not permit this.
20 I think it is important. However the enlightenment of an original base for each individual to depend on while they think is needed in order to consider when and in what circumstance the will of the patient is required.
22 It's a duty to follow laws.
24 Same as question 14. (I think the final decision-making authority for the method of treatment should be in hands of the patient themselves(according to the general rules).)
27 Same as above. (The right to decide the treatment belongs to the person.)
30 To respect for patient's rights and living will.
35 Same as above. (Prognosis differs from disease to disease and also as in this example there are combinations of various diseases. I would respect patient's will, yet opinion from family and medical view points should be considered in order to choose treatment.) I would consult. However it is another question whether to accept the opinion wholeheartedly.
37Y I take it as a matter of course.
38Y To respect person's hope.
39Y Because it is a patient's will.
40Y Patient's will must be most respected.
41Y For reference.
46Y Medical science, especially clinical medicine is advancing by leaps and bounds. There is a high risk of making wrong decision without considering the opinion of the doctor who has a confidence in a particular disease. Though doctor, they are infinitely various. We need the information from one who has the latest information and techniques.
48Y I would obey if it is decided by law.
50Y To respect the patient's will.
51Y I would not wish to prolong my life without any meaning.
53Y I want to respect the patient's decision who made it autonomously.
54Y It is one of the big assumption that the law is reasonable, so it is natural to submit the law.
57N Same as above. (There is almost no assumption of self body condition than choosing the death with dignity.)
58Y When I get the dementia, I could not consult, so I would prefer to entrust with the right of decision. The person I trust or love could understand and assume what I really want to be done from my daily conduct.
59Y I would say yes when consulting is needed. That is to say, I would like to limit the case if the patient and the family still desire after the explanation of the issue mentioned above (such as laws, policies and regulations) to them.
61Y To respect person's life and right.
62Y This is the common sense.
64Y Doctors should recognize as science and try to make choices on treatments by objective data and moreover, they should show which treatment is the best with reasons. Yet, the diseases recognised as no treatments such as in this case, coping would be not science but by philosophical view point. In this situation, the leading is the patient and the proxy designated by them.
65Y Same process as above. (Justly before making a choice, I would consult the patient and the family sufficiently, then try to make a document on the choice and give the treatment.)
70Y I believe the decision of one's will and its indication is the best important.
75Y I am still consulting. If the patient designates the key person, I would feel much more at ease than now. Yet the person designated is only a proxy and not the patient themselves, I would not obey what the person says unconditionally.
77Y I would follow the law.
79Y Usually the treatment should be chosen by the patient, but we have to suppose the time when this becomes impossible, so it is natural to trust them.
80Y Because it is a law.
82Y Same as question 14 (I think the patient's will is most important if the patient surely catches their condition and then chooses the treatment).
83Y We should do if it is the patient's hope.
84Y The right for self-decision making is important and I want patients to consult with and let me know the treatments that they want.
85Y Same as question 14 (I also want to have a right to decide myself).
88Y I want patients to know about ideas toward their treatments for sudden turns for the worse.
90Y This speaking for would be presumed as the patient's hope.
91Y I want to respect the patient's will.
92Y This is because it is a patient's idea.
94Y Because the person is a proxy for a patient.
95Y What a patient wishes should be considered to be most important.
96Y Doing so would consequently relate to respecting the patient's will.
97Y I think I would talk without disagreeing with law, policy and regulation.
98N The patients should decide about their lives.
99Y I would like to know the patient's way of thinking and conditions before dementia started and refer them to the treatment.
100Y I would like to respect the patient's will.
101Y To know more what relates to the satisfaction of own life.
102Y Same as question 14 (I would like to decide the treatment I will get and its result by myself).
103Y I would like to listen to the opinion of the third person.
104Y I would like to listen to the opinion of someone who is thought to have much objectivity.
105Y Same as question 14 (Because I think medical care is something based on patient's will or needs, and is done in the frame of social mutual agreement. In Japan: in order to fulfill these three conditions, 1) patient's rights for self-decision making, 2) social mutual agreement as it ought to be and 3) a system to guarantee 1) and 2), we have to overcome considerable operations).
106Y I would like to respect the patient's will.
107Y Because the patient wishes.
109Y Same as question 14 (I believe the treatment that the patient could consent to is the best one).
110Y To explain the will and to let the others consent before hand would be useful to decrease the mental burden when a person being told of a treatment comes to decide a treatment.
111Y To respect a law.
112Y I want to respect patient's rights to live and to die.
113Y Same as above (I would respect the spirit of laws).
114Y It is prescribed by laws and policy.
115Y If the designate is trustworthy, I can recognize the patient's will in it, so I respect it.
116Y A doctor is the person who cures a patient, not a disease, so I believe it is unnecessary to treat them if against their will.
117Y I want to know opinions from many people.
118Y It is necessary to preserve a document.
119Y It is better to have more information.
120Y I want to listen to a cool opinion from a proxy speaking for the patient. In order to prevent the trouble on their treatment afterwards.
121Y Ask for an exposition from a third person's view, then I would like to think synthetically.
122Y I think the will of the patient or a proxy should be respected.
123Y I think it is an inevitable right for a patient.
125Y In order to confirm a patient's will.
126Y I would basically carry a treatment for a patient according to their will.
130Y By the patient nominating a proxy, there will be less chance of making a decision such as a life prolongation just because of interests of other family members.
131Y I respect self-determination.
Q13
1 Society (support from self-government) i
Maintainence of volunteers i
2 No. 8 is a silly question! The patient already could not make decisions because of dementia which is a prerequisite.
No. 12 - individual QOL is not the kind of thing which is influenced by society.
5 Meaning of options 10-13 not clear.
37 Confirmation of patient's will (It is a confirmation of the influence of dementia on patient's will. There is a case that even though a patient is pretty much forgetful they can still express their will. This can be involved in (3) and (8).)
41 No. 12 depends on a case.
58 The condition of the vacant room.-----the term of waiting of the hospitalization. i
77 the diseases that the patient suffers from at that time-----(i)
96 the mental and physical anxieties caused by the treatment for the patient-----(i)
123 income of a family (economic)-----(i)
Q12
33 The question is strange. Second and third option, if they are suitable for curing last two should be chosen. If not the first option should be chosen.
38 I took the meaning as to suggest.
41 For just an emergency case.
43 We should consider carefully about effectiveness and side effect of oral antibiotics.
53 Depends on the situation.
62 Not sure.
85 I am not going to select but to recommend in order to get consent.
123 I would choose the first choice as an employed doctor to a hospital, I would choose the second choice as a family doctor.
Q10
40 I think this is a not good question. If I have to choose one from these, I would choose the last one.
43 We need to look into how the patient themselves had thought in the past in the case themselves cannot express their will.
53 Impossible to answer, because the meaning of "the decision of treatments" is not clear. If the meaning is the decision as a doctor, doctor should decide. Yet, it is natural to accept the will or wish of the patient and the family through the process of the decision. I think it strange to define. Yet, according to the law, doctors decide the treatment.

Euthanasia cases


Q6a
12 The time that is left to the patient, even there is pain, is precious to them and their family.
18 The establishments such as the situation of how opioid came to use and when did doctor start to take care of the patient are not enough, but 2 would be the close choice.
33 The question is the consciousness of a patient. Therefore it is not possible to answer with this limited content.
35 I would use some medicine which can mitigate patient's pain. I would of course explain to the family the possibility of fastening the death by its use. On the same time I would also try to draw up the deed that has an admission of the family.
38 When the patient is conscious you ask for his wish carefully, and tell his wish to the family.
43 I would choose "2" if it is con firmed that the patient's will is to have priority on a pain control treatment.
44 Try 1 first, and if it is no effective enough to relieve the patient from the pain, then go to 2.
53 1) Call the anaesthetic doctor. 2) Request to open the ethical committee inside the hospital in order to decide how to treat the patient.
57 Opioid is the one of andynes that has little side effect. The establishment of the question itself is wrong.
58 The pain the patient themselves feels and the condition of the suffering that the other perceives belong to different categories. The latter could be controlled by an anodyne or the others except opioid.(e.g. Supokoramine to severe pants.)
59 With the confirmation of the patient and the family whether they care about the side effect of opioid that leads to coma.
69 First I would try 1 and if it's not effective then 2.
96 Treating opioids for pain control, I also treat the drug that could inactivate the central neuron adequately in order to exclude even a little pain, so that the patient could communicate with the family.
111 I could not judge because there was no statement whether a patient's mental state is competent.
116 I would choose 4 when the patient suffers to live through with the condition in 2.
123 I would do sedation using opioid and tranquilizers.(In this case I would explain to a family that there is a possibility to hasten a death by something like suppression of breathing.)
131 The time that is left to a patient and a family, even if there is pain, is precious.
Q6b
12 Not to hasten the death.
35 Same as above. (I would use some medicine which can mitigate patient's pain. I would of course explain to the family the possibility of fastening the death by its use. On the same time I would also try to draw up the deed that has an admission of the family.) Anyway, I would not use the medicine that directly leads the death or stop the treatment(the medicine that increase the blood pressure, artificial respiratory machine) that has already provided.
36 This hypothesis(the patient had a lot talk with a family about death with dignity when he was still in good health) will not be accepted. Doctors should confirm by themselves.
38 Take the patient back to home. Use internal morphine.
43 I would choose "2" if there is an evidence that the patients wish death with dignity.
44 Same as question 6a. (Try 1 first, and if it is no effective enough to relieve the patient from the pain, then go to 2.)
53 Deciding the treatment consulting with the anaesthetic doctors, joined, who have special knowledge and the experience or leave the patient to the anaesthetic doctor.
57 Same as above.(Opioid is the one of andynes that has little side effect. The establishment of the question itself is wrong.) I feel you are mixing death with dignity and euthanasia.
58 But there are no precedents that are charged as the oral morphine or the suppository has hasten the death. We should not do the active euthanasia by using such as KCL.
59 Generally I, probably, choose "2' or "4".
111 Same as above.(I could not judge because there was no statement whether a patient's mental state is competent.)
116 In the cases of the patients in terminal care the presence of a wish for death with dignity would be very important. Therefore we need to spread such a system in Japan.
123 Same as above.(I would do sedation using opioid and tranquilizers. In this case I would explain to a family that there is a possibility to hasten a death by something like suppression of breathing.)
131 I am not going to hasten the death.
Q7
1 It depends on individuals.
2 Euthanasia would easily be killing by mercy. With the consideration of the dignity as human beings, doctors should support to lead natural deaths. Also doctors should think about how patients could feel their rest of lives as significant.
3 Agree with euthanasia with the strict regulation of necessary conditions.
9 We have to stop extreme terminal treatment. Former decrepitude was not an euthanasia, but a close one. It is a practical choice not to do extreme care consciously even to exclude the pain and the like.
10 This is the matter not to decide only by the feeling of the bereaved family but to respect person's will and the situation.
12 I am against to treat these terms as one aim of bioethics. These must be left to doctors who work on the spot where life and death are connected and not to be treated in ethics, sociology and psychology.
14 We should admit the person's will. We should admit it if the organization such as a family affairs court judges that whether the person's offer is appropriate.
15 Conditions such as patients' will, reduction of the mental and financial burden in family, to respect the patient's life and reduction of the burden towards social welfare must be met in a time.
18 Recent judgment on Tokai University would be the reasonable idea of 1995.
19 The prudent discussion on euthanasia is needed. I would like to admit the death with dignity with the sufficient ascertainment of patient's will. There are some people who abuse and misuse the rules in human society, so we should think sufficiently and prudently.
20 Will of individual should be respected. The pain which can be removed should be removed.
22 If all conditions are completed, I would accept the death with dignity. It is better not to accept euthanasia in Japan.
23 Medical treatment is something that brings man with bad health back to better health and not something that calls back man who's heading to death, much less euthanasia. With the issue of the death with dignity, the doctor in charge would be at a loss if one wishes strongly the death of dignity. This is because a blood transfusion and cardiac diuretics for removing pains can be thought as a treatment for prolonging life. (Artificial nutrition would be obviously stopped as it is a treatment for prolonging life.)
24 I hope these issues will be discussed and be recognised among not only clinical doctors but also general public.
26 Every person does not have a positive thought as "I would like to die like this", but does have a thought as "I would not like to die like this". We have to avoid these.
28 I think it is important to solve the question considering human dignity within the appropriate influence from the social opinion.
29 I do not have any opposition against death with dignity.
30 I would consider life sanctity the most. However if it is only prolong life in vain, terminal care considering quality of life would be necessary.
33 I do not agree with short sighted arguments and questions.
35 There are still a lot of problems left unsolved in Japan. I am trying to understand the meaning of them but I believe person's will is the important thing. (As the side of doctors who are involved directly, only one mistake leads these to homicide. To carry these on in practice is still impossible.)
36 I disagree the way which it brings these acts towards practice by leading public opinion with using such words. Doctors should not carry these acts within the shadow of public opinion. They have to think about life more seriously and be suffered. Originally this kind of acts can be decided naturally the way the patient wishes if there is enough understanding and communication between the patient and doctor from the first medical examination.
37 What is called a good medical treatment can result in euthanasia or death with dignity but never aim to death itself. It is also a good living.
38 We should make sure the concrete way of accepting death when we are healthy. We should make it in practice with our own responsibility. To borrow a hand of family or doctor, is to admit their right too much.
40 Though person's will must be respected, euthanasia should not be admitted.
41 We should make an effort to get a social consensus, and establish rules related to laws.
42 I cannot agree with death with dignity and euthanasia which are carried by an easy procedure. They should try to limit by doctors and family sharing pain with the patient themselves. I believe there is some salvation when they reach the limit.
43 We should prepare enough opportunity for the debate for citizens and a limit for immunity from responsibility of doctors.
44 In my opinion, it should be avoided to take any measures to shorten life in any insurance, regardless of whether the patient expects it with a clear will or not. However, it may be acceptable to provide care to alleviate the patient's physical and psychological pain, though it may potentially shorten the life.
46 Euthanasia and death with dignity are often mixed even though they are totally different. Death with dignity is to keep noble soul and personality as a human being till the end, fight with the disease and meet the consented death. It means of course we should support the patient with respecting their will. Euthanasia is mainly focusing on the elimination of physical pain and it is suicide or confusion of personality. Within this issue we should support the elimination of physical pain and the exception of their own death but not with helping the suicide.
48 I agree for death with dignity because I think humans have right to decide how to end their own lives.
51 Basically I agree with them. From today's states of the clinical field, I feel we do have a tendency to have an object in prolonging patients' lives without any meaning.
53 I would like to leave death with dignity or euthanasia as one of the choices of the means of death. I think this is matter that is decided by oneself.
54 If the will is known clearly in such as document, in advance, and there are a third party who could prove it. Moreover, many kinds of conditions should be cleared, also the family should consent to it and then this could be done by the attending physician with proper means. Anyway these must be very rare cases, so that the testimony for all process by the third party should be kept.
55 I am against euthanasia. Death with dignity is permitted if the patient themselves shows their will clearly in the document.
56 The positive enlightening movement is needed in order to promote the wide spread of death with dignity. Euthanasia should be recognised if this clears the very strict conditions.
57 I am agree with death with dignity. I think euthanasia is one kind of homicide.
58 Giving up the positive treatment. Negative euthanasia by the view of person who controls pain is naturally permitted, if there is the will of the patient and the family. Active euthanasia should not be permitted, even there is the patient's will, because this means to help suicide.
59 Euthanasia is the death in comfort. I recognize death with dignity as the death maintaining dignity as person, so excluding pain, such as prolonging the life in sleeping, does not always mean the maintenance of dignity.
64 In news letter volume 14 on page 1 to 5 in 1994, Dr. Kazumasa Hoshino has mentioned that euthanasia and killing with mercy are likely to be confusedly understood. I think this is true. Death with dignity is when person who usually believes intellectual activity brings the dignity gets vegetated state by diseases or accidents, not to treat with such as machine that could maintain the life and lead them to death. Euthanasia is not killing by mercy using drugs but to exclude the pain from diseases by drugs and try to let the patient die comfortably.
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