attitudes and behavior of young european adults towards the donation of organs – a call for better...

Copyright C Munksgaard 2001American Journal of Transplantation 2001; 1: 74–81

Munksgaard International Publishers ISSN 1600-6135

Attitudes and Behavior of Young European AdultsTowards the Donation of Organs – a Call for BetterInformation

Thomas Grossa,b, Sebastiano Martinolia,Giulio Spagnolia, Franco Badiac andRoberto Malacridac

a Department of Surgery, Ospedale Civico, Lugano,

Switzerlandb Department of Surgery, University of Basel, Switzerlandc Sasso Corbaro Clinical Research Institute, Bellinzona,

Switzerland

* Corresponding author: Dr Thomas Gross, General

Surgical Service, Department of Surgery, Basel University,

Spitalstr. 21, CH-4031 Basel, Switzerland, [email protected]

Public perception of organ donation critically affects theavailability of organ transplantation in the Westernworld.To assess the attitude of young adults towards the do-nation of organs and to investigate potential factors in-fluencing their knowledge and actual behavior regard-ing organ transplantation, we evaluated a handoutquestionnaire survey of all Swiss-Italian recruits duringsix of the years 1989–98 (nΩ7272).The attitude of recruits towards organ donation did notchange significantly within the 10-year survey period:61% of young men would personally donate their organsin the case of brain death, 13% would refuse, and 26%had not made up their mind. If they had to decide forclose relatives, 50% would consent; 60% of recruits nei-ther knew their next of kin’s attitude nor had informedthem about their own opinion; 80% felt they were insuf-ficiently informed about organ transplantation. A sig-nificantly more positive attitude towards organ do-nation was found among men who felt they were suffi-ciently informed, who had close next of kin who wereaware of their personal attitude (p ∞0.0001), who hadcontacts with transplanted persons (p ∞0.015), or whobelieved in an existence after death (p ∞0.001; c2-test).Our results suggest that there is potentially large sup-port towards organ donation in this population. To mini-mize the high rate of indecisiveness, young adults needmore appropriate information on the subject and theyask for it.

Key words: Death, organ donation, public survey, ques-tionnaire, transplantation

Received 31 October 2000, revised and accepted forpublication 10 January 2001

Introduction

Organ supply has been called the Achilles’ heel of transplan-tation (1). The continuously increasing number of patients on

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transplantation waiting lists all over the world is contrastedby a stagnancy, or even a decline, in the already insufficientfrequency of organ donation in recent years (2–4). In 1998,in the United States, the total number of patients awaitingtransplants of all types was reported to be 56000, with atransplant candidate dying every 3.5min for lack of an organ(5). In the same year in Switzerland, twice as many patientswaited for a transplant as received one, the Swiss averageorgan retrieval rate of 15.4 donors per million inhabitants(pmp) being comparable to that of the USA or large Euro-pean countries like France or Germany (5,6).

The persistent shortage of organs provokes tremendous ethi-cal conflicts for all persons involved in the procedure of trans-plantation (3,7–10).

Nonreferral of potential donors for organ retrieval and the re-fusal of organ donation by the patient or next of kin havebeen identified as the two main reasons for the discrepancybetween the number of potential donors and the numberof organs actually harvested (11). The need to obtain familyconsent presents a major barrier to organ procurement as itcauses an important psychological burden for the family andmedical staff involved (12–18). Donor action programs andeducational initiatives try to address some of the medical andpsychological problems that arise (4,19–26).

In Switzerland, as in the USA and most countries with trans-plant laws, an explicit consent model is practiced for organdonation (6,14,27,28). The personal attitude towards trans-plantation therefore represents the key determinant of the or-gan donation rate in this context. However, only very fewindividuals have actually made a decision and informed theirnext of kin (14). Even fewer persons have fixed their will inadvance directives such as donor cards or driving licences(29). Therefore, consent for postmortem organ donation isalmost always sought from close next of kin who are usuallyinsufficiently informed and not authorized by the potentialdonor (14). In the difficult situation of grief and anger after thediagnosis of brain death (17,30,31), many next of kin, beingunaware of their relative’s wishes, are shocked and dis-tressed by the request. As a result, they often decide to ref-use organ donation (13,14,29).

Although many individuals stay undecided, public surveysworldwide report a majority of participants with a positiveattitude towards the donation of organs (14,29,32,33), andthe causes for refusal do not vary significantly from onecountry to another (27). Public information campaigns have

Organ Donation Among Young Europeans

been undertaken with considerable effort and cost to im-prove the understanding of the problem and to increase thenumber of donors (1,21,29,32–34). However, with the excep-tion of Spain, such campaigns have had limited success(5,35,36).

In this work, we evaluated the attitude of the younger gener-ation towards the donation of organs. To our knowledge, wereport the largest and longest survey on this subject. For 6years within a 10-year period, we interviewed all 19-year-old Swiss-Italian male military recruits about their attitudestowards organ donation. In a second step in 1998, we in-terrogated all recruits with a more detailed questionnaire inorder to understand better their behavior and potentially tooptimize the efficacy of future information strategies. Weaimed to identify the impact of awareness about transplan-tation as well as sociodemographic and ethical consider-ations on the opinion of young adults regarding organ do-nation.

Methods

The Swiss-Italian region (Ticino) has about 300000 inhabitants. In Switzer-land all 19-year-old men are obligatorily drafted into the army. For 6 yearsduring the time period 1989–98 all Swiss-Italian recruits (1989, nΩ1662;1992, nΩ1361; 1995, nΩ1050; 1996, nΩ959; 1997, nΩ1098; 1998Ω1142) were asked to complete a questionnaire on their first day of recruit-ment. Recruits were asked about their attitudes towards personal organdonation and that of close relatives. In 1998, the questionnaire was moreextensive and asked for detailed information (68 closed questions) con-cerning:

O their personal opinion about organ donation (preferred form of consentrequired to donate organs, acceptance of living donation, legalization ofdonor clubs with priority for receiving organs, permission to sell or buyorgans, xenotransplantation, genetic interventions for organ donation)and presumed opinion of close family members towards the donationof their organs;

O their level of information about organ donation (knowledge about thesize of waiting lists and organs most in need, impression of personalinformation about the subject and necessity of information campaigns);

O the factors potentially influencing their opinion (profession or educa-tional level of father, parental relationship, personal or parental healthsituation, personal thoughts about death and dying, experience with

Table1: Distribution of responses concerning the decision to donate organs in case of brain death in the years 1989–98

1989 1992 1995 1996 1997 1998 Total(nΩ1662) (nΩ1361) (nΩ1050) (nΩ959) (nΩ1098) (nΩ1142) (nΩ7272)

Willing to donate organs personally (%)Yes 62.7 60.9 62.9 65.3 53.2 63.9 61.5No 11.5 13.1 11.5 9.9 14.7 15.3 12.7Undecided 25.8 26.0 25.6 24.8 32.1 20.8 25.9

Would agree to organ donation in next of kin (%)Yes 50.2 50.0 50.3 51.3 47.7 50.1 49.9No 12.0 15.6 9.8 9.8 15.0 15.8 13.0Undecided 37.8 34.4 39.9 38.9 37.2 34.2 37.1

75American Journal of Transplantation 2001; 1: 74–81

incurable diseases in the family and belief in immortality or another formof life after death).

Data were not used for military purposes and were collected and analyzedindependently.

Replies were evaluated using Statistical Package for the Social Sciencessoftware (SPSS, Cary, NC). Data are presented here as numeric values (n)or mean percentages with ranges. Statistical comparisons were performedby means of cross-tabulations with Pearson’s chi-square (c2) test. A p-value ,0.05 was considered significant.

Results

Compliance

All recruits (nΩ7272) returned the questionnaire. The per-centage of nonresponders for single questions ranged be-tween 0.6% (address) and 8.9% (professional status offather).

Decision to donate organs

Within the observation period 1989–98, on average 61%(53.2–65.3) of respondents were willing to donate their ownorgans in the case of brain death, 13% (9.9–15.3) refusedand 26% (20.8–32.1) were undecided. Fifty per cent (47.7–51.3) of recruits would have agreed to donate organs of closefamily members if they had to decide, 13% (9.8–15.8) wouldnot and 37% (34.2–39.9) were undecided. The distributionbetween the different decisions did not vary significantly overthe 10-year period (Table1).

Personal attitude towards living donation

From the questionnaire in 1998 (nΩ1142), 66% of menwould have been willing to donate a kidney to a family mem-ber, as opposed to 9% who would refuse; 25% were unsure:for 14% the decision to donate a kidney depended on thesituation, and 11% didn’t know how they would react. If afriend or partner needed a kidney, 56% of respondentswould donate an organ, 9% would oppose, for 21% the de-cision depended on the situation, and 14% didn’t know.

Similar proportions would accept a living donation of a kidneyfrom a family member or a near friend/partner (Figure 1).

Every third recruit would personally ask a close next of kin for

Gross et al.

a kidney if he needed an organ, one in four would prefer arequest from his family doctor and one-third didn’t want any-body to ask his next of kin (Figure 2).

One-quarter of respondents said they would agree to legaliz-ation of donor clubs which gave priority for organ transplan-tation between the members of these associations, one-quarter rejected such a proposal and one-half of recruitscouldn’t decide. Every fourth man would accept the legaliz-ation of selling organs to unknown persons, in contrast toalmost every second who would refuse such a proposal (Fig-ure 3).

Figure 1: Living donation: willingness to accept a kidney from aclose next of kin (nΩ1142).

Figure 2: Living donation: ‘In the case you needed a kidney fortransplantation whom do you want to ask, a next family member orfriend for an organ?’ (nΩ1142).

Figure 3: Living donation: ‘Would you support the legalization ofdonor clubs or the sale of organs?’ (nΩ1142).

76 American Journal of Transplantation 2001; 1: 74–81

Personal attitude concerning xenotransplantation

and genetic therapy for organ donation

More recruits would refuse a xenograft than would acceptone: every third young man would not take an organ from ananimal, e.g. a porcine heart, even if no human organ wasavailable and his life was at risk. A quarter of recruits thoughtthey would have identity problems after the transplantationof an animal organ (Figure 4). Sixty per cent feared thatscientific development in the field of genetics could becomedangerous for the future of mankind. One-quarter of re-sponders supported scientific studies trying to create genet-ically modified animals with the objective to serve as organdonors in case of need, in contrast to one-half who wouldnot agree to such procedures (Figure 5).

Fixation of will regarding organ donation

Fifty-seven per cent of young men had the impression theirnext of kin would not know their personal attitude towardsorgan donation. Furthermore, 62% admitted they had no ideawhat their close next of kin thought about their eventual or-gan donation (Figure 6).

Six per cent of recruits personally carried a donor card and15% would sign one if it was handed to them; 77% of re-sponders neither had a donor card nor would they sign one.

Fourteen per cent of recruits would agree to a law mandatingorgan donation in the case of brain death, 64% would dis-

Figure 4: Xenotransplantation: perceptibility and psychologicalconcerns (nΩ1142).

Figure 5: Genetic interventions on animals for organ donation: op-position and fears (nΩ1142).


Table2: Willingness to donate organs personally depending on the information about the subject (nΩ1142). Data are n (%); p ,0.0001(chi-square)

Feel themselves to Insufficiently (or notbe sufficiently informed at all) informed

Willing to donate organs 165 (14.5) 565 (49.5)Unwilling to donate organs 23 (2.0) 152 (13.5)Not sure/no opinion 36 (3.0) 201 (17.5)

agree. If they had to choose, 52% of respondents supportedan explicit consensus model of agreement to organ donation,as opposed to 16% who preferred a presumption solutionand 32% who couldn’t decide on the two options (Figure 7).

Eighteen per cent would support a policy by which personswho refuse to donate their organs should, as a consequence,not receive an organ if they needed one.

Level of information about organ donation and

transplantation

Forty-nine per cent of recruits were aware of the existing in-sufficiency in the number of donors, 11% thought that therewere about enough donors and 40% did not know. Fifty-oneper cent of respondents had no idea about which organ ismost in need for transplantation, while 80% felt they person-ally were badly (or not at all) informed about the problems oftransplantation and the donation of organs. Fifty-two per centof men had the impression that the general public was in-

Figure 6: Brain death donation: fixation of will and information ofclose next of kin (nΩ1142).

Figure 7: Brain death donation: preferred type of consent (nΩ1142).


completely informed about the topic of organ transplantation,in contrast to 45% who believed that there was sufficientinformation. Sixty per cent thought that a national informationcampaign about the subject would be helpful to better informthe population, while 13% disagreed with this proposal.Twenty-one per cent of respondents personally knew at leastone person who was waiting for an organ or who had re-ceived one.

Factors influencing the perception of organ donation

(Tables2–7)

A significantly higher agreement to donate their organs wasfound among men: (i) who felt they were sufficiently in-formed about the subject of transplantation (p ,0.0001); (ii)who had already informed their next of kin about their per-sonal attitude towards the donation of organs (p ,0.0001);(iii) who had a higher school level (p ,0.001); (iv) who be-lieved in some kind of life after death (p ,0.0001); (v) whohad previously had contact with transplanted persons (p,0.015); or (vi) who had had former thoughts about dyingand personal death (p ,0.01). The attitude towards organdonation did not depend on the district of domicile, the livingstatus of the father, the personally estimated intensity of re-ligious feelings or the existence of ill family members withoutchance for cure.

Agreement to donate organs where recruits had to decidefor close next of kin showed similar statistical dependencies(Table8, other data not shown).

Discussion

Clinical transplantation remains dependent upon the availabil-ity of much needed organs, and in most cultures organ do-nation has been accepted as an act of altruism stimulated bya sense of moral obligation (12,21,24,37–39), expressed

Table3: Willingness to donate organs personally depending onwhether they had informed close next of kin about their personalattitude towards the donation of organs (nΩ1112). Data are n (%);p ,0.0001 (chi-square)

Had informed Had not informedclose next of kin close next of kin

Willing to donate organs 331 (30) 378 (34)Unwilling to donate organs 66 (6) 107 (10)Not sure/no opinion 60 (5) 170 (15)

Gross et al.

Table4: Willingness to donate organs personally depending on school level (nΩ1088). Data are n (%); p ,0.0001 (chi-square)

Low school level Medium school level High school level

Willing to donate organs 293 (27) 137 (12.5) 260 (24)Unwilling to donate organs 101 (9.5) 36 (3) 31 (3)Not sure/no opinion 112 (10.5) 45 (4) 73 (6.5)

Table5: Willingness to donate organs personally depending on the belief in some kind of life after death (nΩ1142). Data are n (%); p Ω0.0002 (chi-square)

Do believe Do not believe Don’t know

Willing to donate organs 344 (30) 161 (14) 225 (19.5)Unwilling to donate organs 64 (5.5) 49 (4.5) 62 (5.5)Not sure/no opinion 84 (7.5) 46 (4) 107 (9.5)

Table6: Willingness to donate organs personally depending on previous contact with transplanted persons (nΩ1115). Data are n (%); p,0.015 (chi-square)

Had previous contact Did not have previous contactwith transplanted persons with transplanted persons

Willing to donate organs 171 (15) 538 (49)Unwilling to donate organs 28 (2.0) 146 (13)Not sure/no opinion 40 (3.5) 192 (17.5)

Table7: Willingness to donate organs personally depending on former thoughts about dying (nΩ1120). Data are n (%); p Ω0.008 (chi-square)

Often Sometimes Never

Willing to donate organs 201 (18) 430 (38.5) 89 (8)Unwilling to donate organs 55 (5) 83 (7.5) 35 (3)Not sure/no opinion 51 (4.5) 140 (12.5) 36 (3)

Table8: Willingness to donate organs in next of kin depending on the information about the subject (nΩ1142). Data are n (%); p , 0.003(chi-square)

Feel themselves to Insufficiently (orbe sufficiently informed not at all) informed

Willing to donate organs 133 (11.5) 439 (38.5)Unwilling to donate organs 27 (2.5) 153 (13.5)Not sure/no opinion 64 (5.5) 326 (28.5)

freely and without any form of economic or other pressure(40).

In spite of the right of a free decision, individuals in realityoften do not fix their will regarding organ donation (14,29).Although a great majority of individuals would accept an or-gan in the case of need, too few persons place their organsat disposal (6,41,42). The steadily growing number of pa-tients waiting for an organ has stimulated wide efforts in thelast 20years to increase public commitment to organ do-nation (1,14). The efficacy of different public educational cam-paigns, however, is under debate (10,23–25).


We interrogated all 19-year-old men within a well definedregion in central Europe, the Italian-speaking part of Switz-erland. The compulsory day of recruitment offered thepossibility to include every single 19-year-old male subjectin the area under investigation. By this approach we ad-dressed the relevant problem of nonresponders, e.g. formail surveys (29), which counterbalances the disadvantageof not including females in the survey. Indeed, public sur-veys to date have not shown any major gender differencesin attitude to organ donation or transplantation (14,29,43).Furthermore we tried to minimize potential attitude/behaviorincongruences by using an anonymous questionnaire,


avoiding any institutional pressure or moral obligation forparticipants.

This study of the attitude of young men regarding organ do-nation addresses four main areas: (i) the perception, (ii) thefixation of will, (iii) the level of information, and (iv) the socio-demographic and ethical factors influencing the decision todonate organs.

The perception

In a time period (1989–98) when no special informationcampaigns on the topic of transplantation or organ donationhad been undertaken in the region under investigation, theattitude of young men regarding organ donation revealed nosignificant changes or evolutions. Up to two out of threeSwiss-Italian recruits support organ donation – both cada-veric and living donation. Reports from northern Europe andthe USA reveal a similar positive attitude (29,44).

Most surveys report a higher refusal rate towards organ do-nation if respondents have to decide for close next of kincompared with personal donation. Although in a Gallup pollin the USA, 69% of adults said they were likely to be anorgan donor, approximately half of the families asked to con-sider donation of a relative’s organs did not give consent(7,27). A survey of more than 2700 Swedish recruits in 1987reported that about 60% of respondents could accept theidea of their own internal organs being used after their death,but only half of them would give permission to donate organsfrom a deceased relative (33). On the other hand, there arealso reports on equal or even higher donation rates in closerelatives (44). In our study, the percentage who refused todonate organs did not differ whether recruits had to decidefor close next of kin or for themselves (13%). However, moreyoung men were undecided if they had to consider a do-nation in a close next of kin.

The percentage of undecided has to be considered importantin this context. Most reports demonstrate that few peoplehave carefully considered organ donation. In 1993 a USArandom-digit telephone survey of 1002 adults found only12% who had decided not to donate their organs, but 58%were undecided (14). Among those who are undecided, fourmajor groups have been described: (i) ‘hidden negatives’, i.e.people who wouldn’t accept organ donation, but didn’t wantto say so; (ii) persons with misconceptions that can be clari-fied; (iii) ambivalent persons who need time and incitementfor decision; and (iv) individuals remaining undecided, prob-ably as a personality trait. It has been assumed that the firstand last subgroups can be hardly at all influenced by anykind of information campaign (29).

If people are asked to decide for close relatives, the percen-tage of undecided increases still further. In our survey, everythird respondent was not sure how to decide if asked fororgan donation in a close relative, as compared to everyfourth who was undecided for himself. As individuals in themajority are not informed about the will of their close next of


kin, they often decide against organ donation, so as not toharm the integrity of the deceased person (11,27).

The finding that about the same percentage of respondentswould donate and accept organs in case of need reveals aconsistent behavior of Swiss-Italian recruits. The fact thatsupport for living organ donation did not differ significantlyfrom support for donation in cases of brain death suggeststhat the high rate of undecided might not depend on under-standing of the concept of brain death but rather on trans-plantation per se. The unresolved emotional and communi-cational burdens clearly emerge if one considers, for ex-ample, that out of the 60% of respondents who wouldaccept an organ from a family member or partner in the con-text of living donation, less than two-thirds would actively asktheir close next of kin for donation. Open questions and fearsof every second young man towards newer procedures likexenotransplantation or genetic interventions strengthen thepsychological challenge in this context (45–47).

The fixation of will

Although almost two-thirds of recruits would donate their or-gans, only one out of 20 had signed a donor card and one-sixth would take one if offered. Thus, donation campaignscould rapidly realize an increase in the number of card car-riers by merely handing out donor cards (29,43). Interest-ingly, the same percentage of young men (15%) would man-date organ donation in the case of brain death, would restrictthe distribution of organs to potential donors only, or wouldvote for a presumption model concerning the allocation oforgans. In 1984, less than 7% of Americans supported thenotion of presumed consent (44,48). Because of poor do-nation rates this approach has been promoted again recently,provoking strong ethical debate (49,50). Although a majorityof individuals preferred an explicit consensus model in thedecision of organ donation, a majority had not adequatelyfixed their will. In the USA, only 38% of the public had madetheir wishes known to a family member, although 82% be-lieved that the best way to obtain consent is for each adultto decide for him- or herself, rather than leaving this decisionfor the family (14). To resolve this problem, Spital (43) pro-posed the model of mandated choice, demonstrating in asurvey of more than 400 students that, in contrast to 35%of respondents who strictly rejected a presumed consentmodel, only 10% opposed the concept of mandated choice.

The level of information

To come to an adequate decision, a critical amount of infor-mation is necessary. In our study, every second individual wasclearly insufficiently informed about the subject of organ trans-plantation: 50% of recruits did not know either that there is ashortage of donors or which organ is most in need for trans-plantation. The finding that almost two out of three youngadults would donate their organs, although only every one-fifth felt sufficiently informed about the subject is alarming. It isa widespread fact that the population could be better informedconcerning organ donation and transplantation (7,11,43). Manyinformation campaigns aimed to augment the number of do-

Gross et al.

nors, but the results are disappointing (1,3,10,12,14,29,32,35).There are no convincing reports from the medical literaturesupporting the idea that promotional campaigns are really ableto improve public attitudes to organ donation (1,27).

Remarkably, reports on the Catalan experience and psycho-logical studies show that besides delivering intellectualknowledge there is a need to build confidence in the organ-ization concerned with organ donation (25,35,47).

The sociodemographic and ethical factors influencing

the decision

The analyses of potential influencing factors also demon-strated the impressive significance of information on the de-cision of young adults regarding organ donation. Men whowere better informed on the subject, as well as those whohad previously informed their close next of kin about theirwill regarding the donation of organs or who had personalexperiences with transplantation, were significantly morelikely to donate organs. A survey of Swedish recruits foundmen with low intellectual and emotional capacities to be lesspositive about organ donation (33). We did not find thatsocioeconomic factors, e.g. profession or educational statusof father, had a major impact on the willingness to donate.

A second remarkable finding was the more positive attitudetowards organ donation among young men who believed inthe possibility of life after death or who had previousthoughts about dying. Religious and cultural differences playan important role in the context of organ donation, a fieldthat importantly concerns the integrity of body and soul. Onone hand, they make brain death donation impossible (11,51),and on the other they might favour it because of altruisticarguments (12,29,39,41,52).

Evans (37) emphasizes that, for good reason, the ethicalbasis of organ transplantation has been, and must remain,suspect. He argues that well educated individuals and soph-isticated societies are as unsure about when life ends aswhen it begins and concludes that in an effort to inspire altru-ism, it is time to make potential donors and their familiesaware of the severe consequences associated with the re-fusal to donate transplantable organs. Our results underlinethis statement with the need for better information and con-sistent behavior. Beyond that, the findings of this study arerelevant in the light of the ongoing promotion of presumedconsent, organ sale and xenotransplantation (53–55).

Conclusion

A majority of young adults support organ donation personally.But even those individuals who have made decisions regard-ing their own wishes towards organ donation have, in manycases, not informed their family accordingly. By contrast, amajority of young men do not know the attitude of their nextof kin towards organ donation. If young men have to decidefor close relatives in the case of brain death, a smaller num-


ber supports organ donation and the percentage of unde-cided increases. These data strongly support the conceptthat an active consensus model, i.e. the obligatory fixation ofpersonal choice regarding organ donation, is highly likely toincrease the number of committing donors. Even more im-portant, this solution offers for everybody the maximum se-curity that their personal decision to donate or not to donateorgans will be respected. Consequently, the psychologicalburden for all subjects involved in the procedure of organprocurement could be minimized.

Most of all, this survey reveals an alarming lack of knowledgeamong 19-year-old European men about organ donation. Be-cause of the disappointing results of public campaigns so far,new approaches are overdue. Our results suggest that betterinformation, experiences with transplantation and reflectionsabout life and dying have a significant impact on the de-cision-making of young adults. In our opinion, the integrationof these findings should encourage future education initiat-ives. The fact that an overwhelming majority of 19-year-oldmen call for more information provides an attractive startingpoint for the development of such urgently needed policies.

Acknowledgments

We thank Dr Jonathan Mant for his critical review and comments.

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