Japanese Students and Hospital Workers attitude towards Living Organ Donation (N=1064) Summer 2000

Ralph Seewald

Kyushu Institute of Design, Fukuoka

Email: rangaku@yahoo.com

Abstract

A survey was conducted to gather data for this research study. Most of the subjects who took the survey were willing to donate a part of their liver or a kidney to a family member. Overall, about 90%. However, there was a distinction between immediate family members and relatives. While over 95% want to donate an organ to their child, only about 34% are prepared to donate to a relative. The results are as follows; (Kidney/Part of liver); Child (96/96%); Parents (80%/82%); Siblings (79%/79%); Spouse (72%/72%); Relatives (34%/35%). Two thirds of the subjects objected to donating outside the family. The younger the subject the greater the chance that the subject will receive living organ donation. When compared to with other research works in this field, it can be seen that there is less objection to living organ donation than to donation after death. Although reservations are present with body mutilation after death, the same does not appear to be true while the subject is living.

Introduction

Living organ donation with a longer history than non-heart beating or brain dead organ donation poses several problems when it comes to the risks to the donor and the recovery time after removing the organ. Although the Hippocratic oath is now longer sworn in every country, the idea of primum non nocere (in the first place do no harm) is still regarded as common sense for every physician. Therefore, taking an organ or a part of an organ out of a healthy person and transplanting can be considered an illegal act in most countries, since there is no law that provides for operating on a healthy body. In the US, the legal basis for living donor nephrectomy was laid in 1954 in a case where an identical twin brother donated a kidney to his brother. The judge ruled that the loss of a brother would be more harmful than the loss of a kidney (Starzl 1985). In 1996 and 1997, the Netherlands (Akveld, 1998) (Seewald 1998) and Germany (Beck 1997) respectively, revised their laws on organ transplantation. In both countries, there are specific requirements needed regarding the donor and recipient before a transplant procedure. The donor has to be of age, he or she must be mentally able to take care of one�s own interest and must be completely informed of the risks involved. As for the recipient, he or she must be a relative in the second degree or a spouse, and must be clear on the improvements or complications after the operation. Under the Japanese law on organ transplantation there are no clauses about organ donation regarding living donors.

With post-mortem organ donation, the donor and recipient are kept anonymous. Organ donation with living patients develop a close relationship between the giver and receiver of the organ, this makes the potential donor vulnerable to pressures from the potential recipient and the recipient�s family. Compared to post-mortem donation more consideration should be given to the possible violation of rights to the living donor.

Before the appearance of adequate immunosuppressive drugs, most organs donated came from living donors. During that time there was a considerable amount of research concerning the possible development of psychological problems with the donor (Craven 1992).

Craven says that a number of researchers during that time noted that occasionally the �black sheep�Eof the family would offer to donate a kidney in order to be reinstated in the family, or that a retarded or mentally ill family member was put forward as a possible donor. They also noted that a donor hardly refused flatly to donate an organ during life, but used indirect refusal by avoiding medical checks, or contact with the recipient and other family members (Kemph e.a. 1971; Fellner and Marshall 1970; Simmons e.a. 1971).

Living organ donation in Japan

In Japan due to the shortage of organs from brain dead donors, more organs are from living organ donors or in a lesser extent from non-heart beating donors. Due to do lack of organs from deceased, Japanese transplant surgeons have become specialists in living organ transplanting, parts of the liver, lungs, and recently even parts of the small intestines are extracted from living donors.

Kidneys donated in Japan come from (1964-1994):

	Cases
Parent	5,418
Dead body	2,724
Siblings	1,246
Non-blood relatives	241
Other blood relatives	78
One�s own child	54
Monozygotic twins	20
Not specified	20

Total 9,801　

Source Haruki (1997 p25)

Haruki (1997) who had interviews with 36 Japanese kidney recipients and family members, classifies them according to the quality of the donor-recipient, before and after the transplant procedure. In the first group, there was no unreasonable pressure on the potential donor, but in the second group the kidney was not requested but strongly demanded. The potential recipient said things like �Give a Kidney!�E �I had rather die than continue having dialysis�E or �Let me soon have a transplant�E Some children would exclaim to the potential donor�s, mother. Things like �Why did I receive a body like this�E �I have this body because of you!�E �Let me have my body like it was before!�E#060;o:p>

A twenty-year-old male living with his mother and sister refused to have dialysis and was threatening both the physician and his mother with �E I want to receive a transplant soon, rather than dialysis, if not I would rather die�E#060;o:p>

In another case, a family with a 32 year old eldest son, who has led an unhealthy life experienced kidney failure. He refused to undergo dialysis and demanded a kidney from his mother. Although the father opposed to the idea, because of the unhealthy life style of the son, the mother still decided to give a kidney. In the third group the potential donor was the most uncertain, both towards giving an organ and not to have a family member undergo dialysis. The donor was also concerned about the after effects of the donation. Like the second group, there was not much psychological support from the rest of the family to the donor (Haruki pp64-107).

It must be noted that in some cases, the mental state of the recipient can be severely disturbed due to the refusal to undergo dialysis and the by-coming uremia caused by kidney failure.

The potential recipients in the second group feel justified not only to rely on the parents during childhood, but also after reaching adulthood wherein demands are made on the mother. With the urbanization and appearance of the nuclear family and disappearing of the three-generation household, the mother and the child spend much time together. With this she then sees the performance of her child as a gauge for her own self-respect.

If the child happens to be the oldest son of the family and is expected to continue the family line, the pressure on the mother to donate an organ might be even harder. In this case the donor feels almost compelled to donate to keep the peace in the family. The donated organ is not a present but a ransom that is paid. Figuratively speaking, the mother is a hostage and can only release herself by giving her kidney.

Haruki (p137) noticed that all kinds of exchanges could take place between family members. Money, real estate, the act as a guarantee, and this makes organ donation no different from trade. However, family members hardly mention these exchanges when they talk with the transplant surgeon, but is often discussed to a psychiatrist after the operation. In some cases there occured a negotiated change of power in the family. For example �In exchange for the donation of my kidney, my son came back to the country�E �Until now I have endured my position as a yome (Japanese bride), but from now on (after donating a kidney to her child) I expect to be spared from the responsibilities exact by the grandmother of the family�E or a wife who donated an organ to her husband said: �My husband has to become healthy again, so that he can continue to provide for me and my child�E

Haruki (1997, p91) claims that with living organ donation inside the family bares a similarity with domestic violence, where the mother of the house endures physical harm to keep the peace. In the case of organ donation with living patients, the mother scarifies an organ to maintain the family structure.

Method

The attitudes regarding organ donation with living donors were assessed with questionnaires in Japanese. The questionnaire contained questions about living organ donation, and post mortem donation. The questionnaires were handed out at four Universities (during academic class) and distributed at two Hospitals on the following dates:

(The questionnaires retrieved/distributed are 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)

April 19, 1999 retrieved April 26 at Hospital A, Fukuoka (143/150)

June 2, 1999 retrieved July 13 at Hospital B, Fukuoka (225/307)

Results

Attitude towards living organ donation

The difference between the willingness to donate a part of the liver or a kidney was negligible. The donation of a kidney during life was taken as an example.

Table 1: Humans have two kidneys, even with one kidney it is possible to have a normal life. In case a family member or a blood relative needing a kidney, are you willing to donate one of yours?

Age group	Yes/More or less yes	No/More or less no	Missing
15-19	512	36	1
20-29	228	13	1
30-39	62	6	0
40 +	177	19	3

Most were positive about living organ donation and the younger the recipient the more positive the donor will be towards the operation.

Table 2: Occupations of people willing to donate a kidney.

Occupation	Living donor yes	Living donor no	DCM	DCP	DCN
Gen. students	538	37	72	293	195
Med. students	109	10	18	69	30
Physicians	23	7	3	7	19
Nurses	237	14	21	94	119
Technicians	20	0	0	7	12
Pharmacists	21	2	2	11	9
Others	33	5	0	14	2

Chi-square 36.219 (Others: Office workers, shopkeepers, and food supply)

General students (93.2%) were the most inclined to donate a kidney during life while physicians were the least inclined (76.7%).

Table 3: Gender specifies of people willing to donate a kidney.

Age group	Yes/More or less yes	No/More or less no	Missing
Male	392	39	2
Female	591	36	3

Chi-square 4.328

Almost no difference between females (90.5%) and males (93.8%) in willingness to donate.

Table 4: In case you were to donate a kidney, to which of the following people would you be willing to give a kidney?�E(N=979, Missing 5)

	Spouse	Siblings	Child	Parent	Relative
Yes	705	773	944	785	336
No	274	206	35	194	643

Most of the subjects were willing to donate a kidney to their child

Table 5: Gender specifies of people willing to donate a kidney to: (N=979)

	Spouse		Siblings		Child		Parent		Relative
	yes	no	yes	no	yes	no	yes	no	yes	no
Male	331	57	311	76	370	18	313	75	165	223
Female	373	217	462	128	573	17	471	119	170	420

Willingness to donate to �Siblings�E �Child�E and �Parent�Eshowed hardly any difference between the genders, but women (63.1%) were much less apt to donate a kidney to ones spouse than males (84.4%). Men (42.1%) were also more willing to donate to a relative than females (28.8%).

Table 6: Do you have any objection in donating an organ during life to someone outside your family?

Age group	Yes/More or less yes	No/More or less no	Missing
15-19	348	198	3
20-29	168	72	2
30-39	55	12	1
40+	159	35	5

Chi-square 36.254

The older age groups have more objections than in the younger age groups

Table 7: Donation after death as compared to the willingness to donate a kidney during life

	Living organ donation positive	Living organ donation negative	Missing
Has a donor card	115	3	0
Positive about donor card	469	26	1
Negative about donor card	332	71	3

Chi-square 49.384

Subjects who have donor cards showed the most willing to donate an organ during life (97.5%). However even those who reacted negatively about donating after death were quite positive about donating during life (81.8%).

Table 8: Are you willing to offer your body to a hospital for medical research facility after death? (Percentages are given to make the difference more clear)

	No/More or less I do not mind	Against/More or less against	Missing
Want to donate a kidney during life	301 30.3%	677 68.8%	6 0.6%
Do not want to donate a kidney during life	16 21.3%	59 78.7%	0 0%
Chi-square 32.723
Has a donor card	56 47.5%	62 52.5%	0 0%
Positive about donating organs after death	225 37.3%	266 62.7%	0 0%
Negative about donating organs after death	67 16.5%	335 82.5%	4 1.0%

Chi-square 94.042

While there is a strong connection between being against donating one�s body for medical research and being negative about organ donation, this is much less obvious in the living organ donation section.

Table 9: Do you object to an autopsy on your body after your death?

	Yes/More or less objection	No/More or less no objection	Missing
Want to donate a kidney during life	695 70.8%	283 28.6%	6 0.6%
Do not want to donate a kidney during life	56 74.7%	19 25.3%	0 0%
chi-square 29.619
Has donor card	68 57.6%	50 42.4%	0 0%
Positive about donating organs after death	321 64.7%	174 35.1%	1 0.2%
Negative about donating organs after death	331 81.5%	69 17.0%	6 1.5%

Chi-square 54.018

Table 8 also shows that those who do not have donor cards feel the same way about having an autopsy.

Discussion and Conclusion

Most Japanese who did the survey are willing to donate a part of their liver or one of their kidneys to a family member. When asked to whom one is willing to donate there was a large difference between family members who are closely related, relatives and non-family members.

Japanese women are much less inclined to donate to one�s spouse than Japanese males. In choosing a husband, much attention is given to the financial situation of the spouse, and less to emotional attachment. As soon as children are born, she will stop working, either because she wants to devote her time to the children, or because there are not enough day care centers around or in some cases, the mother is forced to stop working because of her changed marital status. In this case, rather than for love the economic stability of the male becomes one of the decisive factors in choosing a partner. The husband will provide economic stability, while she will be a good homemaker.

Living organ donation poses several problems when it comes to the protection of the rights of the donor. In Japan, there is a clearly defined hierarchy in the family this can easily lead to a coercion of the weakest family member (for example the mother) to donate his or her kidney or part of the liver as living donors. More frankly said; other family members will try to keep aloof, and look forward to the time when the mother has donated the kidney and the peace in the home is restored again. On the other hand, children may regard the body as something that they received from their parents, and in return, the parent may feel responsible for the body of the child even long after the child has reached adulthood (Seewald 2000b). A survey done earlier showed that the Japanese aversion to organ donation after death stems mostly from the fear of mutilation of the dead body (Seewald 2000a). Last June 1999, during a meeting in Osaka with Professor Masashiro Morioka of Osaka prefecture University and Tesshuu Shuku (Buddhist priest) from Ryukoku University Kyoto, who assists families with disposing of the deceased family remains. Professor Morioka suggested to find out if this fear of mutilation of the body would be present in living organ donation cases. As table eight and nine shows, it is not the case. Tesshuu Shuku also suggested that the aversion against signing a donor card and the refusal of the family members could be have been because of the adherence the Japanese have with the bones of dead family members. In the survey only one question was about bones and bodily remains �Do you think that the spirit of the person will remain in the bones after death?�E however it showed neither a relation with the objection to donate living body parts nor donating after death. Just like with itai (the body that belongs to the family) that denotes the dead body of a family member. The Japanese use also ikotsu (the bones that belong to the family) for denoting the bones of a family member. It might be that rather than donating organs there is a aversion to donate certain tissue, for example the bones or the skin. Cultural anthropologist Prof. Namihira of the OchanoMizu University in Tokyo shared her views on how the Japanese value the bones of their loved ones. In 1985, a jumbo passenger jet crashed in the mountains of Gunma Prefecture leaving 530 people dead. The surviving family of the deceased collected the bones with great efforts. This act shows how much these remains mean. After the Second World War, which caused so much casualties in Asia, family members of death Japanese military are still looking for the remains of their beloved ones.

In the case of organ donation after one�s life, if the recipient is not necessarily a family member or within a social network, there is not much to gain by donating organs. With organ donation during life, the donor may suffer physically, but clear emotional rewards from the donation can be seen when the health of a family member improves with the received organ. This is the same, when donation is done for the purpose of restoring the peace in the family, and being spared from responsibilities exact by other family members.

References:

Akveld,J (1998) Wet op de orgaandonatie (the law on organ donation)   Tjeenk Willink, W.E.J.

Beck O.J. (1997) Was nun? Gedanken zu Aspekten des neuen Transplantationsgesetzes vom 1.11.1997 (What now? Thoughts on aspects of the new transplantation law of 11/1/1997). Anaesthesist pp 988-991

Bunzendahl, H (1991). �Retrospective Evaluation of Psychosocial Factors in Former Living Related Kidney Donors�E Organ replacement therapy: ethics, justice, commerce, Munich, December 1990 / W. Land, J.B. Doss (eds.). Berlin ; Tokyo : Springer-Verlag

Craven, J and Rodin, G (1992) Psychiatric Aspects or Organ Transplantation. Oxford University Press

Evan, Martyn (1989) �Organ donations should not be restricted to relatives�E Journal of medical ethics 15, p17-20

Fellner, C.H. and Marshall, J.R. (1970). Kidney donors: The myth of informed consent. American Journal of Psychiatry, 126, 1245-51

Haruki, Eiichi (1997) T�eki ka, ishoku ka: Seitai ishoku no seishin igakuteki mondai (Dialysis or transplant?: The psychological and medical problem of organ donation during life). Nihon medikarusentaa: Tokyo

Kemph, J.P., Bermann E.A., and Coppolillo, H. P. (1969). Kidney transplant and shifts in the family dynamics. American Journal of Psychiatry, 125, 1485-90

Seewald, Ralph. (1998) Oranda no zouki ishokuhou settei to sono haikei Nihon hoken iryou koudouka gakkai, Vol.13, (The Japanese Journal of Health Behavioral Science, The social background of the new Dutch law on organ transplantation) in Japanese

Seewald, Ralph (2000a) A survey on the attitudes of 252 Japanese nurses toward Organ Transplantation and Brain Death. Eubios Journal of Asian and International Bioethics Vol 10 (3) (May):72-76.

Seewald, Ralph (2000b) The attitudes of 696 Japanese students towards brain death and organ transplantation. Available at:http://www.oocities.org/rangaku/Japanesestudents.htm

Simmons R.G., Hickey, K., Kjellstrand, C.M., and Simmons, R.L. (1971) Donors and non-donors: The role of the family and the physician in kidney transplantation. Seminars in Psychiatry, 3, 102-115

Starzl, Thomas (1985) �Will Live Organs Donations No Longer Be Justified�EHastings Center report. April. p.5

Acknowledgments:

I would like to thank especially Prof. K. Yamamoto, his help and readiness to introduce me to other physicians was indispensable . This paper 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 all hospital workers and the students, who took the time and effort to fill out the questionnaire.