Bioethics New.r VoI.lZ No.3 12

Conference proceedings: "Transplantation: Asking the hard questions".The proceedings of our November 1992 conference "Transplantation: Asking

the hard questions" are now available at a cost of $12 ($10 for Associates of theCentre). These prices include postage within Victoria: for postage outside Victoria,please add $1.00. If you would like to receive a copy of the conference proceedings,send your cheque to the Resources Officer, Centre for Human Bioethics, MonashUniversity, Clayton, 3168.

Staff at the CentreWe are very pleased to welcome two new research assistants to the Centre:

Ms Leslie Cannold and Dr. John McKie. John will be working on a research projectinvolving resource allocation questions; and Leslie will be working on a projectinvestigating the issue of partiality and impartiality in medical and nursing ethics. Atthe same time, we are sad to lose John Catherwood, a visitor from Ireland and Dr.Miyako Okada-Takagi, who had been with us since 1992. Miyako was awarded afellowship to study organ transplantation in Australia. This study is timely in theJapanese context, as Japan is about to introduce transplantation programs for the firsttime. Miyake's research findings are published in this issue of Bioethics News (seebelow),

The quality of life in transplanted patients and theirthoughts about ethical issues

MIYAKO OKADA-TAKAGI AND TREVOR WILLIAMS

Centre for Human Bioethics, Monash University; Heart/Lung Transplant Service, Alfred Hospital

This study was conducted in patients who received a transplant over 1year ago, to evaluate the quality of life of transplanted patients and toascertain their thoughts about ethical issues related to transplantation.The study showed that over 90% of the transplant recipients achieved thelevel of health that they had expected before the operation. Half of therecipients suffered no anxiety. 50 to 75% of the recipients returned towork, and 40 to 70% of the recipients would like to contribute to societymore than they did before their operation. 70 to 80% of the recipientswere willing to be contacted when the donor family wished to contactthem.In order to increase the number of donors, 60 to 70% of the recipientssuggested establishing an Opting-out system. There was disagreement,however, as to whether the donor family should be paid, whether organsshould be bought or sold. 60 to 80% of the recipients thought usingorgansfrom animals was morally justifiable.

Bioethia New> VoL12 No.3 13

INTRODUCTIONJapan is one of the more advanced countries in medical techniques. Despite

this fact, we have not yet started heart, lung and liver transplantations. One significantreason for this is Japanese reluctance to harvest organs for transplantation, because oftraditional Japanese culture. In Japanese (or Chinese) traditional medicine, thethinking has been that the centre of the human being is "5 zou 6 pun: the lung, heart,liver, kidney, spleen, stomach, bowels and bladder: this does not include the brain.That means we Japanese have a organ-oriented culture, incompatible with abrain-oriented definition of death.

Some Japanese patients have been transplanted with hearts or livers inAustralia, England or the United States. However, because of the shortage of organsin these countries and the necessity for a recipient to pay a huge sum of money, it hasbecome almost impossible.

In January 1992, brain death was accepted as a valid criterion for diagnosingdeath by the Japanese Prime Minister's Ad Hoc Committee on Brain Death & OrganTransplantation. The Japanese government is now preparing a legal framework fororgan transplantation. Heart, lung and liver transplantations will soon start in themain hospitals of Japan.

In the western countries, transplantation has raised some problems so far.One significant problem is the growing gap between supply and demand in organsavailable. In the United States, 1878 people died during 1989 while on the waiting listto receive an organ(I).

Another problem is that transplantation is a very high cost procedure. Shouldthe cost be paid by medicare or private means? Again in the United States somehospitals refuse to operate on patients who lack private means or third-party coverage,and a few hospitals demand full cash payments in advance before they will even entera candidate's name on a waiting list for a liver or pancreas transplantation(2). In 1987,the state legislature in Oregon, in the United States, voted to discontinue funding formost organ transplantations for people on Medicaid with incomes below the federalpoverty level. During the next two years the money was to be used to fund basicpreventive care for nearly three thousand people instead of thirty people who wouldbe benefited by high cost transplantation(3). In response, some low-income peopleorganized a boycott of organ donations(4).

Before the new procedure is introduced in Japan, we should evaluate it invarious way, and should seek to avoid these problems. For this reason, we investigatedthe quality of life in the transplanted patients. At the same time, the recipients'thoughts about ethical issues were investigated. Despite the importance of this secondpart, such a survey has so far not been undertaken.

METHODAt the Alfred Hospital, the study was conducted on every Wednesday from

July to November 1992 at the Heart and Heart/Lung Replacement Services Unit.Wednesday is the medical checkup day for long term organ recipients. The number ofpatients coming to the hospital varied from one to five, depending on the day. All theinterviews were condu cted in a waiting room during a medical checkup. Over 60% ofpatients who received a transpl ant over 1 year ago in the Alfred Hospital wereapproached, and no one declined to participate.

Bioahics N<ws VoLI! No.3 14

Another series of interviews was conducted during the Australian TransplantGames held by the Australian Transplant Sports Association at Bathurst, New SouthWales from 7th to 11th October 1992. The patients were interviewed at random.About 30% of the participants were asked, and again nobody refused our interview.This survey was counted as a sample of successful transplanted patients.

In both places, after obtaining the participants' informed consent, weconducted a 15 minute interview. A structured questionnaire was used (Appendix 1).

At the Alfred Hospital, 63 transplanted patients were studied. Of these, 55were heart, 6 were heart and lung, and 2 were single lung transplants. At theAustralian Transplant Games (Bathurst), 56 patients were studied. Of these, 16 wereheart, 30 were kidney, 10 were liver (VIC-25, NSW-13, WA-7, QLD-6,TAS-3, SA-2)transplants. It was at least one year since the participants had had their organtransplantation.

RESULTSPatient characteristics

Table 1 lists the characteristics of the study participants, and Table 2 showsthe age of the participants. At the Alfred Hospital, most of the recipients were of anadvanced age. Patients in the age range of 51-60 accounted for 44.5%, and patients inthe age range 61-70 accounted for 14%. Thus, patients over 50 years old comprised58.5% of all patients. By contrast, the recipients at Bathurst were much younger, as57% of patients were under 40 years old. This may be due to these recipients beinggathered for sports games.

Annual income of recipientsOur research revealed that the average annual income of the recipients,

including that of their partners, was comparatively low (Table 3). 70% of all recipientsin both interviews had an annual income of less than $30,000; whereas the averageannual income in Victoria in 1991 was about $32,000. Moreover, included in this 70%are pensioners whose income was below $10,000; 41% of recipients at the AlfredHospital and 30% at Bathurst were in this category. Almost everybody used onlyMedicare and private medical insurance; they did not use private means for payinghospital bills. Only two recipients, who were transplanted in a foreign country, reliedpartly on private means.

Postoperative periodAs shown in Table 4, at the Alfred Hospital, patients who were 4 years or less

post-organ transplantation accounted for 95.5% of the total number. On the otherhand, people at Bathurst who were less than 4 years post-transplantation comprisedonly 39%, because of the many kidney tran splanted patients. Kidney transplantationstarted in 1936 in Russ ia, which was much earlier than heart transplantation (in 1967in the South Africa) or liver transplantation (in 1963 in the United States)(6).Therefore research in kidney transplantation is more advanced than in heart and livertran splantations, and many patient s have survived for many years after the opera tion.

All the pati ents at the Alfred Hospital had only one transplant procedure, butfour patients at Bathurst had two and one patient had the kidney transplant procedurethree times.

Bioethia N~ VoI.12 NoJ 15

History of alcohol abuse or heavy smokingA history of alcohol abuse is considered a contra-indication for

transplantation, and it is a common reason for a patient with heart disease to bedenied cardiac transplantation(7). These patients would not be able to comply with thecomplex physical , psychological, and pharmacological requirements during thepostoperative period(8).

When we asked if they had a history of heavy alcohol use before the organtransplantation, only two patients at the Alfred Hospital answered that they had andthere was no one at Bathurst. Of these two, one had consumed over 7 cans of beereach day, and another had consumed about a half bottle of whisky each day. However,they had stopped drinking a few years prior to transplantation.

In relation to heavy smoking, four patients at the Alfred hospital had smokedover 60 cigarettes every day. They had already given up smoking at the hospital'srequest prior to coronary artery bypass surgery, which is a treatment beforetransplantation.

Possibility of late graft failureThe development of accelerated coronary artery disease (CAD) in the cardiac

allograft is one of the major causes of late graft failure in heart transplantrecipients(9). The total number of rejection episodes, elevated total cholesterol(9) andchest pain(lO) may be risk factors for the development of transplant CAD.

At the Alfred Hospital (mainly heart transplanted patients), two recipientshad chest pain, rejection episodes over 4 times and total plasma cholesterol over 6.5mmol/l. Seven recipients had chest pain and either rejection episodes over 4 times ortotal cholesterol over 6.5 mmol/l. Late chest pain after heart transplantation is usuallydismissed as being noncardiac, because it has been assumed that the transplanted heartis permanently enervated (11). However, there is evidence of sympathetic re­innervation after heart transplantation in animal models(12,13).

Since similar accelerated vascular disease has been observed in the grafts ofkidney and liver transplant recipients (14,15), we asked these same questions atBathurst where there were kidney or liver transplanted patients, as well as hearttransplanted patients.

Four patients said that they had transplant vascular disease postoperatively.One person was a kidney transplanted patient, who had had late graft failure and waswaiting for a second transplantation at that time. Another person had a second kidneytransplant procedure. The third person was a kidney transplanted patient, who had ahigh total cholesterol level and had a heart attack. The fourth person was a hearttransplanted patient, had chest pain, 6 rejection episodes and high total cholesterol.

Expectation and realityWe investigated whether the health condition of the recipients was

approximately what they had expected before the operation. 90.5% of the recipients atthe Alfred Hospital and 9R% of those at Bathurst -answered "yes", and a number ofthem even said "better".

People who answered negatively gave some reasons. After the -transplantation,* A patient suffered infection;* A patient had a stroke;

BioetJUaNews VoL12 No.3 16

* A patient had high levels of total plasma cholesterol and suffered a heart attack;* A patient had high blood pressure;* A patient could not behave as a healthy person; and* Some patients could not work full time, because of the fatigue.

The survey showed that almost all of the patients were satisfied by the resultsof their transplantation. However, there were some patients who became disillusionedwhen a return to a previous state of good health, financial status, or ability to workdid not occur(16-18).

AnxietyIn our research, 51% of recipients at the Alfred Hospital and 45% at Bathurst

did not have any anxiety. They said that they learned not to worry about anything afterconfronting their death. This tendency was stronger in older people than in youngerones. Another paper also reports that older patients had a lower level of anxiety. Thispossibly relates to. older patients being more philosophical about the additional timeto live that they have been given(19).

27% of patients at the Alfred Hospital and 32% at Bathurst were worriedabout money. These figures were less than another survey which shows 50% (26) .Anxiety about their present and immediate future health was shown by 22% ofpatients at the Alfred Hospital and 13% at Bathurst. One patient had skin cancertwice after transplantation. ' The risk of skin cancer was increased by using animmunosuppressive drug(20) . In Australia, during the 10 year period 1981-90, therewas a 12% probability of skin cancer by 5 years after transplantation.

24% of patients at the Alfred Hospital and 30% at Bathurst were anxiousabout their long-term future health.

Mood disordersThe technical skill of transplantation is well established now, but there is still

the problem that there is not a perfect immunosuppressive drug. Nearly all themedications routinely used in the post-transplant period may produce psychiatricside-effects(21,22).

As shown in Table 5, the results at the Alfred Hospital differed from those atBathurst. At the Alfred Hospital, 41% of recipients had no disorder of mood and 59%did have a disorder. These disorders included: 33% depression, 21% anxiety, 22%confusion, 35% mood change and 30% irritability (multiple answer possible). On theother hand, at Bathurst 57% of patients had no psychiatric problem, while 43% didhave a problem. These problems included: 13% depression, 5% anxiety, 5% confusion,23% mood change and 13% .irritability (multiple answer possible). Apart from this,other patients felt "upset" or "frightened" or experienced a "hallucination".

Besides mood disorders, · recipients complained of some other symptomsincluding: "being blunt", "forgetfulness", "declining memory", "lack of attentiveness toreading", "migraine" or "unsteady hands".

IdentificationThe graft is not psychologically inert: sometimes the recipient develops a

prominent identification with the donor(23) . We asked the recipients if they ever feltthat someone else was living inside them since the organ transplantation.

Bioethia New>VoLl2 No.3 17

There were 9.5% of patients at the Alfred Hospital and 7% at Bathurst whoresponded affirmatively. Actually, 4 people answered in the affirmative at Bathurst,and two of those four people received the kidney from a living relative. One kidneywas from a patient's father, and another kidney was from a patient's brother. After aliving relative donates a kidney, a much closer emotional relationship between donorand recipient frequently develops(24,25). This research shows that some recipients feltmore than that. People who answered "yes" expressed their feeling as "wondering","strange", "freaked" or "influenced". One patient said, "I am not fond of sport but thedonor was a sportsman, so the transplanted heart wants to do sport." It seems to bethat he was confused about his identity. One liver transplant recipient thoughttransiently of her new organ as " the little girl I never had"(26).

Contact with the donor familyUnder the Victorian Human Tissue Act (1982) (27), details about the donor

should not be released, and the family allowing the use of the deceased's organs neverknows who is benefited. Sometimes, non-identifying details, such as the approximateage of the recipient, may be shared(28). Does the donor family have the right to knowthe recipient? The recipients were asked if they would be willing to have contact withthe donor's family. 82.5% of patients at the Alfred Hospital and 69% at Bathurstreported that they would be willing to be contacted. At Bathurst, some patients saidthat they had lived several years after transplantation, so they had lost interest in thedonors.

A number of recipients commented that they strongly wished to contact thedonor's family so as to seek information about the donor. They believed it would helpthem have confidence in the transplanted organ. Another reason expressed was thatrecipients wished to express their gratitude to the donor family.

By contrast, those recipients not willing to contact the donor's family gave thefollowing reasons :* The donor's family would ask for money from the recipient.* The donor's family would be disappointed that the young donor's organ wastransplanted to quite an old recipient.* The donor's family would think the donor's organ should be transplanted to a betterperson.* The donor's family would be envious that the recipient is living instead of the donor.* If the donor was older than the recipient, the recipient would become pessimisticabout the additional period of life after the transplantation.* It was annoying for a recipient when the donor's family believed that the donorwould continue to live inside the recipient, because the transplanted organ was nowthe recipient's organ, in the recipient's view.

Opting-in or opting-outThe shortage of organ s available for donation is a chronic problem in

Australia as in oth er countries practising organ transplantation. At May 1992, 1750people were waiting for a kidney, 97 for a heart and 60 for a heart and lungs, and theaverage waiting time was 1-3 years for a kidney, 6-8 months for a heart and 1-2 yearsfor a heart and lungs in Australia(29).

BioetlUcs NewsVoL!2 No.3 18

Australia employs an "Opting-in" system for organ donation. In the"Opting-in" system, organs may be taken only if the person before death explicitlygrants permission, or in some cases, the relatives or the representatives grantpermission after death. Despite the fact that over 65% of Australians say they supportorgan donation, out of 17.5 million people, there are only about 200 donors a yearunder this (29).

In contrast to Opting-in, there is another system which is called"Opting-out"(30). In an Opting-out system, organs may be taken after death, unless theperson before death explicitly stated that they were not to be taken, or if the relativesobject to organ procurement after death.

We asked the recipients what they thought about the Opting-out system. Ofthe recipients, 62% at the Alfred Hospital and 73% at Bathurst suggested that theOpting-out system should be introduced to increase the number of donors.

On the other hand, 35% of patients at the Alfred Hospital and 23% of thoseat Bathurst indicated they preferred the present system (Opting-in). Three percent atthe Alfred Hospital and four percent at Bathurst did not answer. '

The reasons why they preferred the Opting-in system were:* Donation should be voluntary.* The Opting-out system contains some kind of compulsion which should not bepresent.* Instead of discussing this option, the government should give more money foreducation.* In Australia, even if someone has agreed to donation while alive, but their relativesobject after their death, the organ will not be taken(27,31). It is this system whichshould be changed, because the autonomy of the deceased should be respected.

Paying the donor familyIn order to overcome the shortage of organs available from donation, some

people have suggested paying the donor families. The 1987 Uniform Anatomical GiftAct (USA) permits all people involved in transplantation (recovery surgeons and theirteams, operating room personnel, donor hospital staff involved in donor care,transplant coordinators, transplant surgeons, transplant physicians) to be paid.Reasonable and legal payment to all who participate in the process of organ donationis now assured except for donor families, who are the most important participants inthe process(I).

We asked about the possibility of paying the donor family. 90.5% of recipientsat the Alfred Hospital and 78.5% of those at Bathurst thought the donor familyshould not be paid, and 8% at the Alfred Hospital and 21.5% .at Bathurst indicatedthe state should pay the donor family for the organ (1.5% at the Alfred Hospital didnot answer) . No one thought that the recipient should pay the donor family for organ.

People who didn 't agree with the payment of the donor family for the organmade some comments:* Payment for organs would extend a market for organs.* After the donor family received the money, probably they would feel guilty.* Paying the donor family doesn't give back the donor himself.

More acceptance of paying the donor family was shown by younger recipients,and they suggested paying the cost for the donor's funeral.

BioeWa News VoI.12 No.3 19

Buying and selling organs from living donorsPaid living donation of kidneys is actively carried out in Hong Kong, Bombay,

Manila and Cairo for wealthy patients from countries in which cadaveric organtransplantation is limited(32). Current prices in India were reported to be about $2000for a kidney from a living donor, $6000 for a cornea and $75 for a small patch ofskin(33).

Whether or not the organ trade has reached Australia is difficult to say. Atleast the idea is there. In Victoria, a father with 2 children wanted to offer one of hiskidneys for sale overseas for $21,000 in order to SUppOTt his family(34). We asked ifthe recipients agreed to a free market in which people could buy or sell organs as theypleased. 98.5% of the recipients at the Alfred Hospital and 93% of those at Bathurstdisagreed with this idea.

Animal organs for transplantationAnother option to overcome the shortage of organs is xenografting. Should

animals provide transplant organs? Some attempts at xenografting have been maderecently.

In June 28 1992, a team at Pittsburgh University transplanted the liver of ababoon into a man for the first time. The man was dying of hepatitis B, a virus whichhad destroyed his liver, and left him unable to receive a donated human organ . Helived for 71 days; an autopsy showed that the liver had not been rejected; thetransplanted organ was still functioning. He died on September 7, 1992(35,36).

In October 1992, the first pig liver transplant into a human was attempted but32 hours after the operation the patient died(37) . In Australia genetically engineeredpigs which have a lower chance of being rejected by a human patient could provideorgans for transplantation within the next 5 years(35).

We asked if it was morally justifiable to raise animals for transplantation.78% of patients at the Alfred Hospital and 61% of those at Bathurst answered that itwas morally justifiable, but 20% at the Alfred Hospital and 36% of those at Bathurstwere against it for emotional considerations or because of personal ethical beliefs (twopercent at the Alfred Hospital and three percent at Bathurst did not answer) . Thereasons for the agreement were:* A human being is the best and is more valuable than animals.* Animals are being killed for the purpose of food, experiments and sport. If someonesaid "no", it is hypocritical.* When people confronted death, one could not think about the morals.* If animals didn't suffer in being killed, humans could use their organs.* Patients are also some sort of guinea pig for transplantation. Animals as well ashumans should contribute to the development of medicine.

Return to workMedical treatment involves not only treatment for disease, but also a return to

work and a social life. Employment status in patients is one of the main indicators bywhich the cost can be measured and justified .

In our survey, 46.5{~) of patients at the Alfred Hospital and 76.5% of those atBathurst returned to full time or part time work, and three percent at the AlfredHospital and four percent at Bathurst also returned to full time study or full time

Bjoedtia News VoLl2 No.3 20

home duties. In the Alfred Hospital 14% were retired, and 9% were at Bathurst. Thepercentage of the return to work at the Alfred Hospital was similar to the surveyconducted by the St.Vincent's cardiac transplant unit(38). Nevertheless 36.5% at theAlfred Hospital and 10.5% at Bathurst were unfortunate to remain on the invalidpension. Invalid pensioners complained that a transplanted patient was regarded as ahealth-risk person and getting employment was very difficult. In fact our interviewsshowed that most of the patients returned to work in farming or in family business,and only a few people were employed.

Of the patients going back to work, 62% at the Alfred Hospital and 49% atBathurst had the same kind of job as before, 28% at the Alfred Hospital and 16% atBathurst had an easier job than before, and 10% at the Alfred Hospital and 18.5% atBathurst had a more demanding job than before. Otherwise 16.5% at Bathurst hadbeen in school or too sick to work before transplantation.

Family lifeHow did family life change after transplantation? For 52.5% of the recipients

at the Alfred Hospital and 43% of those at Bathurst family life stayed about the sameas before, and 36.5% of patients at the Alfred Hospital and 48% of those at Bathurstfelt that their family life had improved . The majority of recipients who were satisfiedwith life after transplantation also reported . the same or improved quality of familylife. But in spite of their satisfaction, when we interviewed some recipients' spouses,they expressed the opposite opinion, that the psychiatric side-effect of the drugs hadled to difficulties in family life.

Eight percent of the recipients at the Alfred Hospital and six percent of thoseat Bathurst indicated their family life had become slightly worse. Three percent at theAlfred Hospital and three percent at Bathurst showed that their family life becamemuch worse because they got divorced or were separated from their spouse. It wasreported in the Journal of American Medical Association that during the period afterdischarge, separation and divorce increased in frequency if a spouse had had atransplantation(16).

Contributing to the societyTransplantation is uniquely dependent on community support. Unlike most

other gift transactions, organ donations are not complete without active socialinvolvement and intervention(39).

The recipients were asked if they felt that they would like to contribute to thesociety since their transplantation. 43% of the recipients at the Alfred Hospital and71% of those at Bathurst felt that they would like to contribute to the society morethan before, and 55.5% at the Alfred Hospital and 27% at Bathurst felt same asbefore. Only one person at the Alfred Hospital felt less than before and one patientdid not answer at Bathurst. .

Three patients who answered "same as before" indicated that they didn'tunderstand the purpose of this question, because Ihey thought transplantation was nOIspeci al, just the same as oth er conventional medical treatm ent s.

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DISCUSSIONCost

21

Transplant procedures are very expensive. The average cost of a hearttransplantation is now between $50,000 - $75,000(40) and the domino operation (tworecipients) costs about $170,000(28). Cost for a liver transplantation is estimated at$100,000(38), and $130,000 for a lung transplantation. After the operation the patientneeds immunosuppressive drugs which are rather expensive, and cost , for example,$10,000 a year for a heart transplanted patient(40). Many doctors are concerned thatthe transplant program is consuming too much of the hospital's resources(41).

Since our research revealed that 70% of the recipients had an annual incomebelow the average , it could not be expected that hospital bills or the cost of follow-upcare including immunosuppressive drugs in the postoperative life could be paid byprivate means in Australia.

Japan spent about 5% of its GNP on medical care in 1990(42,43). By the year2000, demographic changes will lead to the doubling of its over 65 years oldpopulation, and some economists predict as much as 17% of the GNP may benecessary to pay the nation's medical bills(44). Allocation of resources has become aserious issue also in Japan. Should the cost of transplantation be covered by publichealth insurance in Japan just as in Australia? As Dr. Bernadette Tobin discussed at atransplantation conference held by the Centre for Human Bioethics, MonashUniversity(45), this would require the consensus of the society in which it takes placebecause transplantation involves the expenditure of large sums of taxpayers' money onrelatively few people.

Psychiatric side etTectsBasically the majority of recipients showed great satisfaction over significant

health improvements. However, some recipients suffered mood disorders, likedepression, mood change or irritability. These psychiatric side effects are important toconsider when evaluating transplant programs.

The risk of psychiatric side effects increases greatly with the dosage andnumber of immunosuppressive drugs uSed(21,22). According to a Health InsuranceAmerican Association (HIAA) publication(46), the cost of immunosuppressive drugseach year is US$17,000 for a kidney transplantation, US$50,000 for a livertransplantation and US$33,000 for a heart transplantation. This means that kidneytransplanted patients use two or three times less immunosuppressive drugs than heartor liver transplanted patients.

Patients with mood disorders were of a smaller number at Bathurst comparedto those at the Alfred Hospital. This difference came from the number of kidneytransplanted patients, who were only at Bathurst. In Australia tissue matching is theprimary criterion for allocating kidneys(45), and this may influence the dosage ofimmunosuppresive drugs .

Some recipients felt that someone else was living inside them after the organtransplantation. This kind of feeling was not related to mood disorder includingdepression and confusion, since most of them did not have any disorder of mood. Inorder to avoid having a prominent donor's image in a recipient, learning about theprocess how the grafting works may help.

BioedUcs News V.>l.12 N"J 22

Supply of organsHuman organs are a very scarce resource. 15 nations, including Belgium,

France and Singapore, have Opting-out laws(47) to raise the rate of organ donation.The Opting-out law has led to a significant improvement in the availability of donororgans in Belgium and Singapore, although in France the rate has dropped under theOpting-out law(48). Therefore there is no strong evidence that the Opting-out systemhas worked.

Our survey showed that even among the recipients, 23 to 35% objected to theintroduction of the Opting-out system. Under the Opting-out system, there would bepeople who have not actually consented to donating their organs, but have notformally refused, perhaps because they are not motivated to inform the governmentagency, or they don't know about it. In order not to take organs from these people, itwould be better to keep the Opting-in system in Australia.

Contact between donor family and recipient. There were many recipients who wished to contact the donor family. If there

were a properly established contact procedure, which contained an agreement tocontact by both sides and there was participation by a coordinator (to avoid problemslike financial demands from the donor family, and so on), less harm would be incurredin this mutual contact.

In the domino operation, a brain-dead donor's heart and lungs aretransplanted into a man whose healthy heart is in turn transplanted into a anotherman. The first and second patients know each other in some cases. In interviews at theAlfred hospital, even though one of the two patients had passed away, the patientswere convinced of the good effect of having information about the donor or recipient.We suggest that the relationship between the donor family and recipient should not becut off.

Paying for organsOur survey indicated that 80 - 90% of the recipients thought the donor family

should not be paid. Should the motive for consent to organ donation remain totallyaltruistic? It was argued in the Journal of the American Medical Association (1) that afinancial incentive like US$I,OOO (= Aus.$15(0) to organ donation may be effectivethrough increased organ transplantation in minority groups, since donor-recipientmatching within the same race has been associated with better results(49). A modestsum like US$I,OOO would not be a great financial temptation, so the motive forconsent in organ donation would remain altruism, and payment only through thecontrolled management would eliminate real brokerage.

On the other hand, we Japanese have the custom of exchanging gifts at leasttwice a year, and this custom is applied also in hospitals as a form of thanks from apatient to hospital staff. Under these circumstances, it would be difficult 10 accept aconcept of "the gift of life" in the western way which rejects the mutual relationship ,and the meaning of the donation is found by donors themselves(50) . We should thinkabout giving a modest sum to the donor family as a form of thanks controlled by agovernment agency. At least it creates the mutual relationship which is suitable forour custom .

BiodJUa New> VoI.12 No.3 23

Animal organs20 to 35% of recipients said that they didn't agree with xenografting for

emotional reasons rather than for the rational. People concerned with animal rightsobject to the killing of healthy, young animals for xenografting. The use of baboonsdraws particular criticism, not only because they are intelligent social creatures, butalso because they are an endangered species(51). Some researchers oppose the latterpoint. They say the baboon is not an endangered species and could be bred safely andeasily in captivity (35). Perhaps the most significant barrier to successful xenograftingis nonclinical - public acceptability(52).

As discussed before, even in the allograft some recipients develop a prominentidentification with the donor. When it is cross-species transplantation, some recipientsmay confuse their identity as a part of an animal. That is, it could bring morepsychological problem in recipients. Research in xenografting should focus not only onclinical practice but also psychological effects, before xenografting starts in earnest.

Recipients and societyIn order to increase the number of organ recipients who are able to return to

employment, it would be necessary that the patient's health condition be explained topotential employers by the hospital staff. Better understanding in society would alsohelp.

Although conventional medical treatment consists of patients and a medicalteam, transplantation requires moreover donors and a community support systemwhich maintains the donation rate. This is why there is the argument(45) that aperson's social contribution should be taken into account for candidates for organtransplantation.

In our interview work, three recipients indicated that transplantation was justthe same as any other medical treatment, so there is no reason why they should begrateful to the society. Should this attitude be discouraged? The fact that there arerecipients who didn't appreciate the donors and the community support mightinfluence the donation rate and the social consensus in favour of transplantation. Wesuggest that some kind of education for recipients should be carried out to avoid theseproblems.

CONCLUSIONOur research showed that the majority of recipients were satisfied with their

health condition, and over the half of recipients returned to work even under therecession in Australia. As problems, some recipients suffered psychiatric disorders, anda number of recipients wished to contact the donor's family which is prohibited underthe law. This study has provided some insights into the transplantation program inAustralia which may be helpful for the planning of transplantation in Japan.

APPENDIX I: QUESTIONNAIRE1. You are

1) male 2)female

2. Your age is

BWdAia Me_ VoLl2 No.3

3.

24

1) 0 - 20 2) 21 - 30 3) 31 • 40 4) 41 - 50 5) 51 • 606) 61 - 70

Your ethnic group is1) European 2) Asian 3) African 4) Arabic5) Aboriginal Australian 6) other - please specify ( )

4. You are1) single ( • never married • divorced )2) married3) in a de facto relationship

5. Do you have children ?1) yes 2) no

6. Your annual income is (including that of your spouse or partner):1) below $10,000 2) $10,000 - $30,000 3) $30,000 • $50,0004) $50,000 - $70,000 5) over S70,OOO _

7. Which organ did you receive in the transplant procedure?1) heart 2) heart & lung3) single lung 4) kidney5) liver

8. How long ago did you have your organ transplant ?1) 1 year 2) 2 years 3) 3 years4) 4 years 5) 5 years 6) over 6 years

9. Did you have a second or third transplant procedure?1) no 2) Yes second transplant 3) Yes third transplant

10. Did you pay for the hospital bills by using1) Medicare ( )%2) private medical insurance ( )%3) private means ( )%4) donation from the public ( )%5) assistance from relatives ( )%

11. Did you have a history of heavy use of alcohol before your organtransplant ?1) yes ~ no

12. If yes, how many standard drink would you have had each day?1) 1 - 3 cans of beer2) 4 - 6 cans of beer3) > 7 cans of beer4) about a quarter bottle of wine

Bi~/hia News VoI.12 N,,3 25

5) about a quarter bottle of whisky6) about a half bottle of wine7) about a half bottle of whisky8) about one bottle of wine9) about one bottle of whisky10) another amount - please specify ( )

13. Did you have a history of heavy smoking before your organ transplant ?1) yes 2) no

14. If yes, how many cigarettes would you have smoked each day?1) 1 to 30 2) 31 to 60 3) 61 to 90 4) over 90

15. Did you have any problems with rejection of the transplant?1) yes 2) no

16. If yes, how many times ?1) 1 time 2) 2 times 3) 3 times 4) 4 times 5) 5 times6) 6 times 7) over 7 times

17. Do you have transplant vascular disease postoperatively?1) yes 2) no

18. If yes, describe how much this restricts your activities.

19. Is your total plasma cholesterol level higher than normal?1) no it's normal 2) yes about 5% 3) yes about 10%4) yes over 10% 5) you don't know

20. Do you have chest pain?1) yes 2) no

21. If yes, describe how much this restrict your activities,

22. Is your health condition now approximately what you expected before theoperation?1) yes 2) no

23. Are you anxious about1) money2) your present & immediate future health3) your long-term future health4) I am not anxious about anything.

24. Do you have any disorders of mood postoperatively?1) yes 2) no

Bioahics New3 VoLJ.?No.3 26

25. If yes, what kind of disorders of mood?1) depression 2) anxiety 3) confusion 4) mood changes5) irritability

26. Since the organ transplant, do you ever feel that someone else isliving inside you ?1) yes 2) no

27. If the donor's family wished to contact you, would you1) be willing to be contacted.2) not be willing to be contacted.

28. There is a shortage of organs available from donation. Another suggestion isthat the state should pass a law which takes the view that everyone ispresumed to consent to the donation of organs, if he or she should be braindead, unless the person has "opted out" by informing government agency thathe or she does not wish to donate.What do you think about this Opting out system?1) in favour of this suggestion.2) prefer the present system.

29. Some people have suggested paying the families of donors to overcome thisshortage.Do you think :1) The recipient should pay the donor family for the organ.2) The state should pay the donor family for the organ.3) The donor family should not be paid.

30. If 1) or 2), how much?1) the cost for the donor's funeral2) the cost for the donor's funeral plus some more3) another amount - please specify ( )

31. Another suggestion is that a free market should operate, so that people canbuy or sell organs as they please, provided they can pay for them.Do you agree with this suggestion ?1) yes 2) no

32. Another suggestion is that animals should provide transplant organs. InUnited States, a baboon liver was transplanted to human in June 1992, and inAustralia scientists are trying to make genetically engineered pigs which havelower chance of being rejected by human patients.Is it morally justifiable to raise animals for spare-pan surgery ?1) yes 2) no

33. Have you returned to work?1) yes to a full time job 2) yes to a part time job

Bioelhia New< VoLI2No.3

3) yes to a full time study5) no

27

4) yes to full time home duties

34. If 1) or 2), do you have1) the same kind of job as before?2) an easier job than before?3) a more demanding job than before?

35. Since your transplant operation, has your family life1) stayed about the same as before.2) improved3) become slightly worse4) become much worse

36. Since your transplant operation, do you feel that you would like to contributeto society?1) more than before?2) same as before?3) less than before?

APPENDIX 2: TABLES

TABLE 1: Characteristics of study participants

Recipients at the Alfred Recipients at BathurstHospital (N=63) (N=56)

Male, % 82.5 70.0Ethnicity, %

European 100.0 98.0Asian 0.0 2.0

Living with partner, % 81.0 62.5Having children, % 89.0 61.0Received organ , %

Heart 87.0 28.5Heart & Lung 10.0 0.0Single Lung 3.0 0.0Kidney 0.0 53.5Liver 0.0 18.0

Biodhia N""" Vol.12 NoJ

TABLE 2: Age of the recipients

28

Age (year) % of the recipients at the % of the recipients atAlfred Hospital (N =63) Bathurst (N =56)

0-20 1.5 9.021 - 30 6.5 16.031 - 40 6.5 32.041 - 50 27.0 18.051 - 60 44.5 16.061 - 70 14.0 9.0

TABLE 3: Annual income of the recipients

Annual income ($) Alfred Hospital (N =63) Bathurst (N=56)

0-10,000 41.0 30.010,000 - 30,000 29.0 37.530,000 - 50,000 21.0 21.550,000 - 70,000 6.0 5.070,000 - 3.0 4.0did not answer 0.0 2.0-

TABLE 4: Post-organ transplant period

Post-organ transplant % of the recipients at the % of the recipients atperiod (year) Alfred Hospital (N=63) Bathurst (N =56)

1 - 2 32.0 11.02-3 38.0 12.03-4 25.5 16.04-5 1.5 11.05-6 1.5 14.06 1.5 36.0

TABLE 5: Recipients with mood disorders (multiple answer)

Mood disorders % of the recipients at the % of the recipients atAlfred Hospital (N =63) Bathurst (N=56)

depression 33.0 13.0anxiety 21.0 5.0confusion 22.0 5.0mood change 35.0 23.0irritability 30.0 13.0no disorder 41.0 57.0

BjOdhia New>VaLI2 NOJ 29

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We would like to express our sincere thanks to Ms Sue Tamlyn for her assistance atthe Alfred Hospital