The Attitude of 696 Japanese students towards brain death and organ transplantation

Ralph Seewald

3.1 At first

As most papers concerning Japanese views of brain death and organ transplantation are based on cultural presumptions of the Japanese people as a whole, this paper seeks to understand the personal views of individual groups. In this study, students were chosen because they can be seen as representatives of Japan’s future, but also as products of the past. Medical students were polled separately as they might have differing views than would non-medically orientated students.

3.2 Method

The students’ knowledge, attitudes, and beliefs regarding organ donation and their willingness to make a donor card were assessed using a 75-item questionnaire in Japanese, of which five questions were subdivided in open questions. Questionnaires were handed out at four Universities during academic classes on the following dates. Retrieved/distributed are given in parenthesis.

April 14, 1999 at University A, Fukuoka (208/213)

June 1, 1999 at University B, Tokyo (285/296)

July 7, 1999 at University C, Okayama (104/104)

July 8, 1999 at University D, Fukuoka (99/100)

(Average retrieval rate was 97.62%. Data was analyzed using Statistical Package for Social Science)

3.3 Results

For analysis, the students are divided in three groups:

“Donor Card Made” (DCM) describes students who filled out a donor card.

“Donor Card Positive” (DCP) describes students who did not made a donor card, but were willing or more or less willing to make one

“Donor Card Negative” (DCN) describes students who did not make a donor card and were not willing to make one.

3.3.1 Students’ views about having a Donor Card and organ donation

Table 3.1: “Comparing the age of DCM, DCP and DCN groups”

Age	DCM	DCP	DCN	Missing	Total
18	39	162	99	9	309
19	38	119	76	5	240
20	10	52	27	2	90
21	1	13	16	0	30
21+	4	16	7	0	26
Missing	0	1	0	0	1
Total	92	362	225	17	696

The average age of the students was: 19.0 (18.97), (Std. Deviation 1.42) Minimum age 18, maximum age 31. Of the students 92 (13.2%) had made a donor card.

Table 3.2: “Gender”

	DCM	DCP	DCN	Missing	Total
Male	41	204	127	5	377
Female	51	158	98	12	319

Chi-square 8.780

More female- than male students had made a donor card.

Table 3.3: “General students as compared to Medical students”

	DCM	DCP	DCN	Missing	Total
General	74	293	180	195	577
Medical	18	69	30	2	119

Chi-square 3.970

In general, medical students had similar views towards organ transplants, as did non-medical students. The difference is negligible, and they have been grouped together for the remainder of the paper.

Table 3.4: “Do you think that brain death is the death of human?”

	Yes/More or less yes	No/More or less no	Missing
DCM	75	15	2
DCP	278	79	5
DCN	139	84	2

Chi-square 24.943

In DCM 81.5% thought that brain death was the death of human against 76.8% in DCP and 61.8% in DCN.

Table 3.5: ”Do you think it is possible for a brain death person to recover?”

	Yes/More or less yes	No/More or less no	Missing
DCM	22	69	1
DCP	121	240	1
DCN	89	134	2

Chi-square 8.790

Overall 34.3% thought that is was possible for a brain death to recover, even of those who made a donor card 24% thought this was possible.

Table 3.6:”Do you think that a person who is brain death and a person who is so-called unconscious vegetable state are the same?”

	Yes/More or less yes	No/More or less no	Missing
DCM	28	64	2
DCP	111	251	5
DCN	87	136	2

Chi-square 9.670

Even of those who a donor card more than 30% thought brain death and being in unconscious vegetable state are the same.

Table 3.7:”Do you agree with the transplanting of organs from a brain death person?”

	Yes/More or less yes	No/More or less no	Missing
DCM	86	6	0
DCP	300	60	2
DCN	142	79	4

Chi-square 47.132

Table 3.8:”Kidneys can be transplanted from a person who’s heart has completely stopped. In case you need a kidney-transplant would you want to receive this from a person who is heart death?”

	Yes/More or less yes	No/More or less no	Missing
DCM	79	13	0
DCP	296	66	0
DCN	162	62	1

Chi-square 13.360

Table 3.9:”Hearts and livers can only be transplanted from brain death donors. If you need a liver or a heart transplant would you be willing to receive one of these organs from a brain death person?”

	Yes/More or less yes	No/More or less no	Missing
DCM	67	25	0
DCP	284	77	1
DCN	154	79	4

Chi-square 8.751

Slightly more students wanted to receive an organ from a person that is heart death compared to receiving an organ from someone who is brain death

Table 3.10:“Which of the following organs would you prefer to donate?” (DCM and DCP only, Missing values 24)

	Kidney		Heart		Lung		Pancreas		Liver		Small Intestine		Cornea
	yes	no	yes	no	yes	no	yes	no	yes	no	yes	no	yes	no
DCM	85	5	80	10	84	6	82	8	85	5	80	10	80	10
DCP	291	49	259	81	276	64	270	70	291	49	267	73	257	83

90 students objected to donating their cornea, but were willing to donate other organs, and 17 students were willing to donate only the cornea.

Table 3.11: “Have you ever donated blood?”

	No	1-5 times	5-10times	10+	Missing
DCM	55	30	5	2	0
DCP	251	99	6	6	0
DCN	178	42	3	2	1

Chi-square 21.331

Of DCM and DCP had donated more times blood than DCN

3.3.2 Reasons for having a Donor Card or not, places were the Donor

Cards were obtained.

The students were asked with an open question why they had filled out a donor card. The main reasons are sequentially listed below.

“After I die I do not need the organs anymore, if there is someone is in need of organs and my organs can be used, he or she can have them” (22)

“Because I want to donate my organs” (11)

“When I become brain dead I want to have my will clearly expressed” (7)

“After I become brain death I want to be useful for other people” (4)

“To help others and prevent that my death was in vain, it is a waste if my body would not be used after my death” (4)

Other sentiments were:“I have a person in my family who needs a transplant”; “A donor card is novelty, I can show off with it”; “It is a remembrance of my birthday, from than on I wanted to be more useful to other people”.

The students, who did not sign a donor card, where asked by open questions why not, the main reasons are sequentially listed below:

“I do not know much about donor cards, how to obtain one or how to make one” (125)

“I did not have an opportunity to fill out a donor card” (110)

“I do not want to donate organs” (29)

“I am still thinking about making a donor card” (28)

“My family does not allow it, or I did not consult my family yet” (27)

“No special reason” (25)

“Making a donor card is bothersome” (18)

“Organ transplant is not something that is close to me” (12)

“A donor card is a frightening thing” (10)

“I object to have a part of my body cut out, or to be cut into pieces” (8)

“I do not want to think about my death yet” (6)

“I cannot accept brain death as the death of human” (4)

“The privacy of the donor and family is not well protected” (3)

After February 1999 when the second heart transplant was performed, donor cards became available at more places. This is reflected in the different places where the students obtained the donor card. Most students received a donor card at the University (25).

At the convenience store (19), post office (9), From a friend (8), From a family member (7). Donor cards were also obtained at the pharmacy, library, blood donation center, hospital, and community center.

3.3.3 The Role of the Family

Table 3.12: “The Japanese Law on organ transplantation requires besides the donor himself the explicit consent of the family. How do you think about this?”

	Consent family necessary	Consent donor only	No opinion
DCM	42	41	9
DCP	147	152	63
DCN	85	85	55

Chi-square 11.605

The reason why the consent of the family is necessary was asked by an open question: "Why do you think that the consent of the family is necessary?" The following were the most mentioned.

“Because they are my family, the permission of the family is necessary” (29)

“The body belongs to the person himself, but belongs also to the family. The feelings of the family are important, when donating a part of the body I need permission of the family” (33)

“One is not living alone in this world” (23)

“I feel uneasy, since my family has all kind of different feelings” (14)

“My family gave birth to me and brought me up” (8).

“The person himself is not being able to decide alone” (7)

“If the permission of the family was not necessary I just could be cut open like that” (6)

“Only the family members are taking good care good care of the donor” (6)

“One has been brought up and raised by the family, if only the person himself decides it is too selfish” (6)

“I want to respect and not hurt the remembrance of the family left behind”(4)

“Organ donation gives annoyance to the family” (4)

“The body is not just of the person himself, therefore after donation the remembrance (of the parents) will be bitter” (3)

“It is a matter of feeling, one never completely approves donation of organs from a family member” (3)

“The opinion of the persons around is important” (3)

“It is essential for the family to know the in what condition the body of the donor is”(3)

“After my death the rights of the body go to the family that raised me” (2)

“The family should not upset the ancestor’s” (2)

“When I become a parent, I would like that my child informs me about a potential donation” (2)

“The family should be given time to accept death” (2)

“I want to have the approval of the people who are close to me” (2)

“If someone of my family becomes brain death and the heart is still moving I do not like it when there are organs removed” (2)

“One has not grown up only by one’s own strength” (2)

Other sentiments included:

“There is a world after death, I want to take my whole body to this after-world”; “Because of the donation the family will be at loss”; “Maybe my body (belly gets sunken) is going to look worse after the donation”.

Table 3.13: “”Have your ever talked with your family about a donor card”?

	Yes	No	Missing
DCM	71	21	0
DCP	179	182	1
DCN	79	145	1

Chi-square 49.204

In addition, students who did not make a donor card talked considerable with their family about the donor card.

Table 3.14: “If you talked with your family about a donor card, how do think about if you fill one out?” (n=329)

	Agree/More or less agree	Against/More or less against	Missing
DCM	57	14	0
DCP	113	58	8
DCN	33	38	8

Chi-square 31.065

19.7% of those who has a donor card made the card against the will of the family.

3.3.4 View on Dead Body and Body Image

Table 3.15:“Do you mind to give your dead body to a hospital for medical research?”

	No/More or less I don’t mind	Against/More or less against	Missing
DCM	44	48	0
DCP	139	223	0
DCN	41	182	2

Chi-square 39.521

Of the students who made a donor card more than half were against giving one’s body for medical research. At the same time 18.2% of DCN is willing to give one’s body for medical research but does not want to donate any organs.

Table 3.16: “Do you mind if an autopsy is performed on your body after your death?”

	Yes/More More or less yes	No/More or less no	Missing
DCM	56	36	0
DCP	232	130	o
DCN	187	37	1

Chi-square 31.159

The same can be said about autopsy, even in DCN 37 student do not mind if autopsy is performed after one’s death.

Table 3.17:“Do you have objection if a dead body is cut open to take out organs in order to perform organ transplantation?”

	Yes/More or less objection	No/More or less no objection	Missing
DCM	26	66	0
DCP	166	193	3
DCN	143	81	1

Chi-square 39.285

Most remarkable is that of the students who made a donor card 26 of them has objection against the necessary surgery that goes along donating one’s organs.

Table 3.18: “As of February 2 1999, the heart, liver, kidneys and corneas were transplanted from a brain death person. Which organ do you think is emotionally the most essential organ of the human body?”

Choose from the following organs: “Kidneys”, “Brain”, “Liver”, “Lungs”, “Heart”, “Other”.

	Heart	Brain	Kidneys	Lung	Liver	Brain and Heart	Other: Whole body	Other: Eyes/Cornea
DCM	29	43	0	2	2	3	13	0
DCP	144	146	4	1	5	12	45	4
DCN	75	110	2	4	3	1	27	3

DCM and DCN viewed the brain more as the center of the body than DCP.

3.3.5 Features from the Japanese folk religion

Table 3.19: “Do you think it is possible that when a corpse of a family member is mutilated, the spirit of this corpse will bring misfortune to the bereaved family?”

	Possible/More or less possible	Impossible/More or less impossible	Missing
DCM	3	89	0
DCP	31	331	0
DCN	36	187	2

Chi-square 18.967

As mentioned in the introduction, there is the view that the objection towards organ donation stems from the fear that after donation the spirit of the donor will have a bad influence on the surviving family, however overall only 10.2% of the students believe this.

Table 3.20: “Do you think that after death the spirit can be reborn in another person”?

	Yes/More or less yes	No/More or less no	Missing
DCM	41	50	1
DCP	142	218	2
DCN	84	136	4

Chi-square 8.786

In DCM more believe in reincarnation into another human being compared to DCP and DCN.

Table 3.21: “Do you think that after death the spirit of a person can be reborn in another living being?”

	Yes/More or less yes	No/More or less no	Missing
DCM	35	56	1
DCP	139	220	3
DCN	78	144	3

Chi-square 4.789

Beliefs about reincarnation into other living being e.g. animals, shows no relation with one attitude towards organ donation.

Table 3.22:“Do you think that after death the spirit of a person remains in the bones?”

	Yes/More or less yes	No/More or less no	Missing
DCM	20	71	1
DCP	60	301	1
DCN	40	182	3

Chi-square 4.344

Table 3.23:“Do you think that after death the spirit of a person remains in the death body?”

	Yes/More or less yes	No/More or less no	Missing
DCM	17	74	1
DCP	65	296	1
DCN	41	182	3

Chi-square 1.972

When asked if the spirit will remain in the body or the bones after death, there is hardly any difference between DCM, DCP and DCN.

Table 3.24: “Do you think there is a life after death?”

	Yes/More or less yes	No/More or less no	Missing
DCM	40	49	3
DCP	166	192	4
DCN	97	124	4

Chi-square 4.202

Even among DCM 43.5% believed that there is life after death.

Table 3.25:”Do you think it is possible to communicate with a deceased family member?”

	Possible/More or less possible	Impossible/More or less impossible	Missing
DCM	33	54	5
DCP	166	195	1
DCN	97	124	4

Chi-square 16.621

Proportionally much less students in DCM thought that it was possible to communicate with a deceased family member.

Table 3.26:“There is a religious belief that says, "Humans have also in the afterlife the same body form as they have in this world". Does this view resemble your view of afterlife?”

	Yes/More or less yes	No/More or less no	Missing
DCM	25	66	1
DCP	113	248	4
DCN	56	167	2

Chi-square 4.473

The view that also in afterlife the body will have the same shape shows no relation with being against organ donation or not.

Table 3.27:“Do you have a Buddhist altar or/and a household Shinto shrine?”

	I have both	Buddhist altar /no Shinto shrine	Shinto shrine/no Buddhist altar	None of them	Missing
DCM	6	4	3	77	1
DCP	20	31	9	301	2
DCN	16	13	7	185	1

Chi-square 31.130

Table 3.28:“Are (Is) there a Buddhist altar or/and a household Shinto shrine in your parental home?”

	I have both	Buddhist altar /no Shinto shrine	Shinto shrine/no Buddhist altar	None of them	Missing
DCM	40	18	11	22	1
DCP	140	75	38	107	2
DCN	91	40	23	70	1

Chi-square 27.420

Contrary to what would be expected one could find more Buddhist altars and household Shinto shrines in the parental home of DCM (75.1%) to DCN (69.9) and DCP (68.4%). However when asked if they had a Buddhist altar or household Shinto shrine himself or herself, there is hardly any difference between DCM, DCP and DCN.

Table 3.29:“In what style do you want to have your funeral performed?”

	Buddhist style	Shinto style	Christian style	New religious style	Non religious style	Missing
DCM	36	3	5	2	42	1
DCP	188	6	19	3	125	2
DCN	122	1	10	1	84	1

Chi-square 62.410

When it comes to one’s own funeral for DCM the non-religious style was the most popular compared to DCP and DCN.

Table 3.30:“Did you make a first visit to a Shrine in the New Year (hatsumoude)?”

	Yes	No	Missing
DCM	61	30	2
DCP	66	34	1
DCN	143	81	3

Chi-square 3.944

Those who made a donor card were slightly more apt to pay a first visit to a Shrine in the New Year

Table 3.31:“Did you ever carry an amulet during an entrance examination?”

	Yes	No	Missing
DCM	71	19	2
DCP	269	92	1
DCN	156	66	3

Chi-square 6.816

Believing in the power of an amulet shows no relation between the attitude towards organ transplantation.

Table 3.32:“Which of the following religious views is the most close to your view? “Choose from the following: “Buddhism”, “Shinto”, “Christianity”, “New religion”, “Non religious”

	No religion	Buddhism	Shinto	Chris- tianity	New religion	Buddhism/ Shinto	Buddhism/ Christianity	Missing
DCM	49	25	4	13	0	0	0	1
DCP	196	110	15	27	3	2	3	6
DCN	121	72	7	15	1	1	1	7

Proportionally more students in DCM said that their religion was Christianity.

Chi-square 18.223

Table 3.33:“What is the religion of your parental home?” Choose from the following “Buddhism”, “Shinto”, “Christianity”, “New religion”, “Non religious”

	No religion	Buddhism	Shinto	Chris- tianity	New religion	Buddhism/ Shinto	Missing
DCM	11	70	3	2	1	1	4
DCP	73	263	9	7	0	3	7
DCN	38	168	5	3	1	2	8

Chi-square 41.577

Proportionally more students in DCM said that their parental home had a religion.

The following items showed no relation with being positive or negative about organ donation.

1. Making a first visit to a shrine in the New Year

2. Having an amulet or not

3. Thinking that there is life after death

4. The belief that after death the body form of a person stays the same

5. Thinking that after death the spirit of a person will remain in the bones

6. Thinking that the spirit of a person will remain in the death body

7. The spirit of a person can be reborn in another living being (e.g. animal)

3.4 Discussion

3.4.1 Attitude towards Having a Donor Card

When the students were asked why they made a donor card 22 answered that after death they did not need the body anymore. These views are similar to those in the West where the influence of Cartesian philosophy separates the body and soul, and the body is merely an object. One would expect that those students who replied that after their death they did not need the organs any more, would not believe in a life after death or that the body form in the next life was the same as in the present life, however, when comparing those answers, that was not the case.

Most of the students could not give a precise reason for not making a donor card and stated that they did not know much about donor cards. It seems that there is a lack of public information about organ donation. Quiet surprising is that although the issue of brain death has become a center of the discussion in Japan, only four subjects mentioned that they did not fill out a donor card because they think brain is not the death of a human. Table 13 shows that of those who made a donor card 47% saw the brain as the center of the body, against 41% of DCP and 49% of DCN. Opinions of which organ was the emotional center of the body showed no effect on attitude towards making a donor card.

Those that made a donor card or were positive towards making a donor card saw brain death more as human death (80%) than DCN (60%). With the present law on organ donation the Japanese have the opportunity to choose on the donor card if brain death is the death of human or not. Kidneys can and have been transplanted for years from non-heart-beating cadavers, thus being opposed to brain death does not make a person ineligible for donating organs.

Lock (1996b:157) says

“Any essentialist argument to the effect that Japanese tradition effectively curtails the acceptance of brain death as the end of life would be entirely out of place. To acknowledge the Japanese tradition as influential would in effect be to say that the Japanese are superstitious and irrational. Thus to acknowledge a cultural contribution to the brain-death debate is not easy for it implicitly sides with nationalism and the power of tradition over economic power”.

The percentage of students that made a donor card in this survey (13.25%) is higher than the national percentage. It is lower, however, when compared to a survey of done amongst those in their 20s. A telephone survey done among 1188 Japanese by the Asahi Shinbun showed the donor card rate was 3% in October 1998, 5% in March 1999, and 9% in February 2000. The last telephone poll also showed that 17% of those in their 20s and 15% of those in their 30s said they had a donor card. Women in their 20s were the highest category with 23% (Asahi Evening News 2000). In this survey, the percentage among female students was also higher at 16%, compared to male students at 11%.

Of the students in this study, 48% had talked with their family about making a donor card. Those who made a donor card (DCM) had talked the most with their family (77%), about 50% of the DCP group spoke with their families and 35% of the DCN group had done the same. Discussing with family members suggests that the opinions of the individual are largely influenced by the views of the family, however, just under 20% of the DCM group made a donor card against the will of the family.

3.4.2 Body Image View on the Dead Body

With a recent survey among 252 Japanese nurses (Seewald 2000:72-76) showed that the aversion towards organ transplantation stemmed mostly from the fear of bodily mutilation. Also with the students those who are negative about having a donor card, showed a much more negativity attitude towards:

1. Giving one’s body for medical research

2. Autopsy after one’s death

3. Cutting the body for the sake of organ transplantation

Of those who made a donor card, 28% said that they had objection if a human body is cut open in order to perform the operation, a fact that seems somewhat contradictory, but implies that while the idea of organ donation is accepted, the thought of bodily mutilation is still repulsive.

Ruth Richardson (1996:90) states that “with few exceptions, in almost every known culture in the world ancient and modern, postmortem mutilation has been regarded as something inflicted upon the corpses of enemies or malefactors. Western religious teachings embody and have often fostered the ancient notion that the care of the dead body influences the fate of the spirit/soul, that bodily coherence is somehow analogous to spiritual coherence. In addition, special meanings are associated with specific organs especially the heart and the eyes”. This is supported by survey (table 5) where 90 students objected to donating the cornea, but were willing to donate other organs, however, oddly enough, 17 students were willing to donate only the cornea. In addition, in Japanese, the presence of the term Gotai-manzoku, or “having all the five body parts perfect” implies the importance of having the body intact during life but also after death. In the past, Japanese whose bodies were not intact or deformed received considerable discrimination (Ohnuki-Tierney 1994:232-254). However, in the survey there was no relationship between “thinking that in the afterlife humans have the same body form as they in this world” and being negative about organ donation.

Namihira (1997:61-67) states about the dead body image in present Japan: “For the Japanese a body is both material and immaterial, biological and social. Cremation is a way of changing the life time identity rather than disposing of it. Cremated bones are not seen, by the Japanese, as human remains but as the actual body of the dead person". Being cremated with the body intact seems to be very important for the Japanese. For some, because they see the body as something that was received from the parents and should be returned to them as it was given. However few believed, according to research that spirit will remain in the dead body or in the bones, and less than 10% of any of the student groups believed that the spirit of mutilated corpse can bring misfortune to the bereaved family.

Overall, 43% of the students thought it was possible to communicate with a deceased family member. This communication with the dead is deeply ingrained in the Japanese folk religion, and is usually done in front of the Buddhist Altar. Of the Students who made a donor card only 59% thought that communicating with a deceased family member was not possible against 54% in DCP and 55% in DCN. Having contact with a deceased family member is taboo in the West, because it is better one should not commune with the spirits. When the students were asked if they had a Buddhist Altar or/and a household Shinto Shrine, the answers of DCM, DCP and DCN were similar, 83% said they had nor a Buddhist altar and/or a household Shinto Shrine. However when asked if there was a Buddhist altar and/or a household Shinto shrine in the parental home, in the parental home of DCN was in 31.1% of the cases neither a Buddhist altar or household Shinto shrine compared to 23.9% for DCM and 29.6% for DCP. If not making a card is because of religious reasons one would expect that the parental home of DCM was less religious and less attached to the ancestors, but that is not the case.

The same is true for the question: “Do you think that after death the spirit can be reborn into another person?”. In DCM more students (45%) thought that this could be possible, as compared to DCP (40%) and DCN (37%). One would have expected the reverse.

Finally, it should be noted that overall 65% felt positive towards organ donation regardless if they had made a donor card or not.

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Acknowledgments

I would like to thank especially Prof. K. Yamamoto, MD at the Health Service Center of the Kyushu Institute of Design. Although being a busy physician and university Professor, he found time to teach me about the medical aspects of brain death and organ transplantation. His readiness to introduce me to physicians employed at other University Health Service Centers was indispensable.

This thesis was made possible with the help of the following Professors, MD’s and teachers: (in alphabetical order)　

Amano Keiko of the Health Center of the Tokyo University Of Fisheries

Tobe Kazuo of the Health Center of the Okayama University

Yamamoto Hiromichi of the Kyushu University Faculty of Medicine

I would also like to thank the students, who took the time and effort to fill out the 75-item questionnaire.