Brain Death and Organ Transplantation: Knowledge, Attitudes and Practice among Japanese students

- *Alireza Bagheri, M.D., * Takamasa Tanaka, R.N.,** Hideto Takahashi, Ph.D., *Shin'ichi Shoji, M.D.,Ph.D.

*Department of Neurology, University of Tsukuba, 1-1-1 Tennodai,Tsukuba Science City 305-8575, Japan

**Department of Community Medicine, University of Tsukuba.

Eubios Journal of Asian and International Bioethics 13 (2003), 3-6.

Abstract

Objective: To investigate the knowledge, attitudes and practice of Japanese students regarding brain death and organ transplantation.

Methods: A 22-item questionnaire was handed out among 383 Japanese students during the 2002 academic year. The data was finally analyzed using a statistical package for social sciences, SPSS.

Results Most students knew that organ transplantation can save a life 97%, while only 38% of the students were aware that there is no treatment for brain dead patients. Overall, 60% of the respondents believed brain death is equal to human death and 63% believed that organ removal from brain dead donors is mutilation of the body. There was a negative association between the students who reported positive attitudes toward the idea that removing an organ is mutilation of the body with their willingness to be a donor. Of the students 27% were opposed to the necessity of family agreement for organ donation. Although 66% expressed their wish to be a donor, less than half of them, 31% had a donor card; and 40% did not even know how to get a donor card.

Conclusion: Granting a veto power to the family as well as the mistaken idea that there is recovery from brain death, can be considered as obstacles to organ procurement from the brain dead in Japan. The high value of life among Japanese society and the willingness to be a donor, bring hope that giving correct medical information and proper public education can increase social acceptance of organ transplantation from the brain dead in Japan.

Key Words: Brain death in Japan - Organ transplantation law.

Introduction

In Japan, although, debates regarding organ transplantation from the brain dead began over 30 years ago, after the world's second heart transplant had been performed in Sapporo, (Morioka 2001)¹, controversy still surrounds this issue among specialists as well as the public.

Despite the availability of the necessary technology, expertise and an organ transplantation law since 1997, the Japanese medical system is reluctant to use brain dead donors and the statistics of organ procurement from brain death are not satisfactory.² Many experts believe that this resistance arises from Japanese folk religion and cultural barriers (Veatch 2000, Morioka 2000 )^3,4. In order to facilitate social acceptance for organ procurement from the brain dead, these barriers should be clarified. Students, as the current generation, possess the heritage of the past and they are considered to be the source for the future as well. This survey explored students' knowledge and attitudes towards brain death and organ transplantation, as well as their practice if they have been put in a brain dead state, virtually.

Materials and Methods

The students knowledge, attitudes and practice regarding brain death and organ transplantation were assessed in a questionnaire with 22 open- and closed-ended questions in Japanese. The 383 questionnaires were handed out at a clinical anthropology class among non-medical students (82%), and also at a medical ethics class among medical and nursing students (18%) during the 2002 academic year at the University of Tsukuba. The students were in their first and second academic years and participation was voluntary. Of the students, 51% were female and 47% male. In this survey, there were 4 questions designed to evaluate the students' knowledge, 11 questions on their attitudes and 7 questions to evaluate their response as their practice in a simulated real situation.

All 383 questionnaires were collected and the data was finally analyzed using a statistical package for social sciences, SPSS.

Results

The Students' knowledge regarding brain death and organ transplantation

As Table 1 shows, most students knew that organ transplantation can save life and only 38% of the students were aware that there is no treatment for brain dead patients.

Recognition that there is no treatment for brain dead (144) 38% was significantly associated with their willingness to be a donor (253) 66%. (Spearman rank correlation coefficient, rs = 0.1354, P = 0.009).

The students were asked with an open question: "What is the difference between transplantation from cardiac dead and brain dead donors?" Their answers were categorized and are sequentially listed below: Transplantation from cardiac death and brain death are different because:

A brain dead patient is alive, 28%; No answer, 22%; The difference is, heart beat and blood circulation, 11%; There is no difference, 10%; Just as a medical matter (technically) in transplantation are different, 8%; Family feelings are different, 5%; The difference is in social acceptance, 3%; Body temperature is different, 3%; I do not know, 2%.

Students' attitudes

When we asked their attitudes towards the necessity of family consent for organ donation, according to the Japan organ transplantation law, the majority, (274) 72% agreed, but (102) 27% opposed the law (P <0.01).

The majority (345) 90% of the respondents agreed to transplantation from cadavers (p<0.001) and the students who agreed to organ transplantation from living donors 231 (60%) tended to not agree to donation from brain dead donors (80%) ( MacNemar test, c² = 39.4, P <0.001) (Table 2).

The students attitudes toward the equality of brain death as human death (228) 59% were significantly associated with their willingness to be a donor, (253) 66%, (Spearman test, rs = 0.2435, P <0.001).

When they were asked about the reasons for their objection to receiving an organ from a brain dead donor: 43% (166) replied, because brain death is not real death (P =0.66); 25% (97) believed brain death is mutilation of the human body (P = 0.001); 32% (122) hesitated to receive another human's organ to be transplanted (P = 0.001); and 11% (41) because of mistrust of the medical system (P= 0.001). Poor knowledge about brain death (138) 36% was also among their reasons (P = 0.001). (Subjects could chose more than one option).

There was a negative association between the students who reported positive attitudes toward the idea that removing an organ is mutilation of the body (63%) with their willingness to be a donor (253) 66% (Spearman test, rs = - 0.126, P =0.015).

Table 1: General attitudes questions (Yes/No Questions) [N (%)]

Questions	Yes	No	Missing	P Value*
Q1.Do you know OT can save life?	371 (96.9)	12 (3.1)	0	.001
Q2.Do you think that OD is a humanitarian action?	322 (84.1)	53 (13.8)	8 (2.1)	<.001
Q5.Do you think that BD is real death?	228 (59.%)	149 (38.9)	6 (1.6)	.001
Q6.Do you know there is no treatment for BD?	147 (38.4)	225 (58.7)	11 (2.9)	.001
Q9.Do you think that removing an organ
from BD is mutilation?	242 (63.2)	134 (35)	7 (1.8)	<.001
Q12.Would you agree if your beloved ones
receives an organ from BD?	340 (88.8)	39 (10.2)	4 (1)	.001
Q13. Would you like to be a donor?	253 (66.1)	122 (31.9)	7 (1.8)	.001
Q14.Do you have a donor card?	117 (30.5)	266 (69.5)	0	<.001
Q17.Do you agree to donation of one of your family members
who becomes a BD and has already signed a donor card?	295 (77)	82 (21.4)	6 (1.6)	.001
Q19.Do you think that family agreement is needed
to fill out a donor card?	268 (70)	106 (27.7)	9 (2.3)	<.001

Note: N = 383, OT = Organ Transplantation, BD = Brain Death, OD = Organ Donation.

*Test was conducted by excluding missing values, which means percentage in every cell changed to achieve sum of Yes and No number for 100%.

Table 2: Attitudes Towards the Sources of Organs for Transplantation [N (%)]

Sources of Organ	Yes	No	Chi-Square	P value
From living donors	231 (60.3)	152 (39.7)	16.3	.001
From cadavers	345 (90.1)	38 (9.9)	245.1	<.001
From brain dead	306 (79.9)	77 (20.1)	136.1	<.001
From animals	139 (36.3)	243 (63.4)	28.3	<.001

Table 3: In your opinion, Why are some People Against Organ Transplantation from Brain Dead Donors? [N (%)]

Reasons	Yes	No	Missing	Chi-Square	P value
People think BD is not real death	335 (87.5)	43 (11.2)	5(1.3)	225.6	<.001
Removing an organ is mutilation of the body	137 (35.8)	241(62.9)	5(1.3)	28.6	<.001
Lack of knowledge	128 (33.4)	250(65.3)	5(1.3)	39.4	<.001
Distrust of the medical profession	63 (16.4)	315 (82.2)	5(1.3)	168.0	<.001
Emotional and spiritual	18 (4.7)	360 (94)	5(1.3)	625.0	<.001

N = 383, BD = Brain dead

Table 4: Which of the following sources would you Prefer, if you Need to Receive an Organ? [N (%)]

Source of organ	Yes	No	Missing	Chi-Square	P value
From living donor	178 (46.5)	201 (52.5)	4(1)	1.28	0.258
From cadaver	181 (47.3)	198 (51.7)	4(1)	0.677	0.41
From brain dead donor	16 1(42.1)	218 (56.9)	4(1)	8.29	0.04
Refuse transplanted organ	36 (9.4)	342 (89.3)	5( 1.3)	247.7	0.001

When their opinion about the reasons that people have for not agreeing to transplantation from brain dead donors were asked, (335) 88% replied the people object because they think brain death is not human death; (63) 16% of people distrust the medical system ( P <0.01), Table 3.

The students were asked two open questions regarding organ removal from a brain dead donor and transplantation into another body:

What will the donor lose and what would be the benefit of the recipients? Their answers are sequentially listed below:

The donor will lose his/her chance to be alive, 22% (82); the recipient will receive another life, 63% ( 240); the donor will lose just an organ, 21% (82); and the recipient only an organ 8% (30); Nothing will be lost, 21% (81); and nothing will be received, 0.5% (2).

Having a donor card (117) 31% was significantly association with the students' willingness to be a donor (253) 66% (Spearman test, rs = 0.3522, P <0.05).

The students' practice

Seven questions aimed to evaluate how students will practice what they believe: for instance, their wishes to be a donor, having a donor card, their actions when their lives depend on receiving an organ as in a real situation - are some of the items, which have been surveyed as their practice.

Regarding their willingness to be a donor and having a donor card, 31% (117) had donor cards but 70% (266) did not (P <0.05); also, 66% (253) expressed their wishes to be a donor and 32% (122) did not (P= 0.001) (Table 1). Among those students who had signed donor cards, only 56% always carry their cards.

As Table 4 shows when their lives require an organ, the first choice is receiving an organ from a cadaver 181 (47%), which is in the same rank as in their attitudes. Students who agreed to organ transplantation from living donors (47%) did not tend to agree to receive an organ from a brain dead donor (42%) (McNemar Test, c² = 1.32, P = 0.25).

Among the respondents who did not hold a donor card (266) 70%, the reasons were: 39% do not know how to get one; 36.3% were opposed to organ transplantation; family disagreement, 11%; and 8% distrusted the medical system.

In response to the question: If you hold a donor card, under which of the following situations would you agree to donate your organs?, 12% agreed to donate at brain death, 17% at cardiac death, 53% at both, either brain or cardiac death, 15% did not fill the donor card out yet, and 1% did not answer this question.

Discussion

The percentage of the students that had positive attitudes towards organ transplantation from brain dead donors in this survey (80%) is slightly higher than that in another survey (65%), which was conducted among Japanese students (Seewald 1999)⁵, Regarding to the mater of distrust to the medical professions, which has been stressed by some commentators (Kimura 1991, Lock 1996)^6,7, in this research, the students expressed less distrust of the medical system compared to public opinion, 11% vs 16% (P = 0.01).

Theoretically, the idea is that an individual can chose the definition of death based on the cessation of either the heart or the whole brain for organ donation; this is called the "pluralistic approach to human death in Japanese law" (Morioka 2000)⁸. On the other hand and in reality, the necessity of family consent to donation, which is reflected in the Japan organ transplantation law, gives the family veto power (Akabayashi 1999 )⁹. Therefore, in many cases conflict rises between one's wish to donate and the family's decision; in practice, the family is always the winner and the individual wishes to donate organs would be ignored.

Keeping in mind that in this survey, 26.6% the students were against that law and 21.4% responded that they would not follow their family members' will to donate

We compared the results of this survey with those of a public survey regarding the question, "do you think brain death is human death?" The affirmative answer in this survey was 59.5%, higher than that of public opinion (52%).¹⁰

Regarding the source of organs either in their attitudes or when their lives require receipt of an organ, the first choice is receiving an organ from a cadaver. But as a second choice, when they themselves have to receive an organ, they prefer to receive an organ from a living donor rather than a brain dead one, (46.5% vs 42.1%). The percentage of respondents with donor cards in this survey was 30.5%, which is higher than the national percentage (17%)¹¹ and also higher than that in other surveys of Japanese nurses (8%)¹²and students (13.25%)¹³. Interestingly a survey of general population in the USA showed almost the same percentage (30%) to have signed donor cards¹⁴. The fact that overall 39.3% of the students did not know how to get donor cards even after 5 years of the existence of the organ transplantation law in Japan shows the lack of proper public education.

Conclusion

Although, the role of the family in the decision-making process in Japanese society is indisputable, the granting of veto power to the family in the Japanese organ transplantation law causes an obstacle to follow ones wishes to donate organs; 26.6% of the respondents in this survey expressed objection to that law.

No doubt, the incorrect idea that "brain dead is treatable", as 58.7% of the respondents in this survey believed, is a key aspect of social resistance to accept organ transplantation from brain dead donors; with such a belief, their reluctance to organ procurement from brain dead donors is understandable. Perhaps public education on this matter should be reviewed. No significant differences were found between the students' responses to the questions that were aimed to evaluate their practice in a virtual situation with their responses to the questions designed to survey just their attitudes. Therefore, it seems that giving more correct medical information and drawing a picture of the patient's real situation and how their lives depend on receiving an organ might have changed the society's attitudes towards brain death. This would result in improvement of organ procurement from the brain dead.

Japanese society has consensus on many issues related to life and death issues such as the great value of life (inochi), the importance of saving life, the Japanese tradition of gift-giving, as well as willingness to be a donor (66.1% in this survey). Emphasizing these consensus values in public education could increase public acceptance of organ procurement from brain dead donors. Acknowledgement

The authors would like to thank the students who took the time and effort to fill out the questionnaire. We also thank Professor Richard Weisburd for his comments on the earlier drafts of this paper.

References

1. M. Morioka, "Reconsidering brain death, A lesson from Japan's fifteen years experience", Hastings Center Report,31, no 4 ( 2001), , 41-46.
2. Japan organ transplantation net work( JOTNW)homepage:

Available at, http://www.jotnw.or.jp/news/news.html.

3.R. Veatch, Transplantation Ethics.(Washington D.C. Georgetown University Press) 2000, 4-6.
4. M. Morioka,." Bioethics and Japanese culture, Brain death, Patients' rights and cultural factors",　Eubios Journal of Asian and International Bioethics 5, 1995, 87-90.
5. R. Seewald, "The attitudes of 696 Japanese students towards brain death and organ transplantation". 2000, Available at:http://www.geocities.com/rangaku/Japanesestudents.htm.

6. R. Kimura, "Japan's dilemma with the definition of death" Kennedy Institute of Ethics Journal, June 1991. 123-131.
7. M.Lock,."Deadly dispute, Brain death in Japan".Organ transplantation ,Meaning and realities. Younger, S. et al. Wisconsin. (The University of Wisconsin press) 1996,151.
8. M. Morioka, and T. Sugimoto,. "A Proposal for Revision of the Organ Transplantation Law based on a Child Donor's Prior Declaration". Eubios Journal of Asian and International Bioethics 11, 2001108-110.
9.A. Akabayashi,"Transplantation from a brain dead donor in Japan", Hastings Center Report. 29, ,no.3, 1999 May and June.
10.Asahi Newspaper, Japanese poll on brain death,1999,
Available at, http://www.lifestudies.org/specialreport02.html.

11.Asahi Evening News, Donor cards held by a record, Tuesday, 29th February 2000, page 4.
12. R. Seewald,.".A survey on the attitudes of 252 Japanese nurses towards Organ Transplantation and Brain Death". Eubios Journal of Asian and International Bioethics 10 ( 3) 2000, 72-6.

13. See Ref. no 5.
14. The Gallup organization, The American public's attitudes toward organ donation and transplantation. Conducted for the partnership for organ donation (Boston. MA. Feb 1993), 4-15.

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