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Keywords:

  • Death;
  • organ donation;
  • public survey;
  • questionnaire;
  • transplantation

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

Public perception of organ donation critically affects the availability of organ transplantation in the Western world.

To assess the attitude of young adults towards the donation of organs and to investigate potential factors influencing their knowledge and actual behavior regarding organ transplantation, we evaluated a handout questionnaire survey of all Swiss-Italian recruits during six of the years 1989–98 (n = 7272).

The attitude of recruits towards organ donation did not change significantly within the 10-year survey period: 61% of young men would personally donate their organs in the case of brain death, 13% would refuse, and 26% had not made up their mind. If they had to decide for close relatives, 50% would consent; 60% of recruits neither knew their next of kin's attitude nor had informed them about their own opinion; 80% felt they were insufficiently informed about organ transplantation. A significantly more positive attitude towards organ donation was found among men who felt they were sufficiently informed, who had close next of kin who were aware of their personal attitude (p < 0.0001), who had contacts with transplanted persons (p < 0.015), or who believed in an existence after death (p < 0.001; χ2-test).

Our results suggest that there is potentially large support towards organ donation in this population. To minimize the high rate of indecisiveness, young adults need more appropriate information on the subject and they ask for it.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

Organ supply has been called the Achilles' heel of transplantation (1). The continuously increasing number of patients on transplantation waiting lists all over the world is contrasted by a stagnancy, or even a decline, in the already insufficient frequency of organ donation in recent years (2–4). In 1998, in the United States, the total number of patients awaiting transplants of all types was reported to be 56 000, with a transplant candidate dying every 3.5 min for lack of an organ (5). In the same year in Switzerland, twice as many patients waited for a transplant as received one, the Swiss average organ retrieval rate of 15.4 donors per million inhabitants (pmp) being comparable to that of the USA or large European countries like France or Germany (5,6).

The persistent shortage of organs provokes tremendous ethical conflicts for all persons involved in the procedure of transplantation (3,7–10).

Nonreferral of potential donors for organ retrieval and the refusal of organ donation by the patient or next of kin have been identified as the two main reasons for the discrepancy between the number of potential donors and the number of organs actually harvested (11). The need to obtain family consent presents a major barrier to organ procurement as it causes an important psychological burden for the family and medical staff involved (12–18). Donor action programs and educational initiatives try to address some of the medical and psychological problems that arise (4,19–26).

In Switzerland, as in the USA and most countries with transplant laws, an explicit consent model is practiced for organ donation (6,14,27,28). The personal attitude towards transplantation therefore represents the key determinant of the organ donation rate in this context. However, only very few individuals have actually made a decision and informed their next of kin (14). Even fewer persons have fixed their will in advance directives such as donor cards or driving licences (29). Therefore, consent for postmortem organ donation is almost always sought from close next of kin who are usually insufficiently informed and not authorized by the potential donor (14). In the difficult situation of grief and anger after the diagnosis of brain death (17,30,31), many next of kin, being unaware of their relative's wishes, are shocked and distressed by the request. As a result, they often decide to refuse organ donation (13,14,29).

Although many individuals stay undecided, public surveys worldwide report a majority of participants with a positive attitude towards the donation of organs (14,29,32,33), and the causes for refusal do not vary significantly from one country to another (27). Public information campaigns have been undertaken with considerable effort and cost to improve the understanding of the problem and to increase the number of donors (1,21,29,32–34). However, with the exception of Spain, such campaigns have had limited success (5,35,36).

In this work, we evaluated the attitude of the younger generation towards the donation of organs. To our knowledge, we report the largest and longest survey on this subject. For 6 years within a 10-year period, we interviewed all 19-year-old Swiss-Italian male military recruits about their attitudes towards organ donation. In a second step in 1998, we interrogated all recruits with a more detailed questionnaire in order to understand better their behavior and potentially to optimize the efficacy of future information strategies. We aimed to identify the impact of awareness about transplantation as well as sociodemographic and ethical considerations on the opinion of young adults regarding organ donation.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

The Swiss-Italian region (Ticino) has about 300 000 inhabitants. In Switzerland all 19-year-old men are obligatorily drafted into the army. For 6 years during the time period 1989–98 all Swiss-Italian recruits (1989, n = 1662; 1992, n = 1361; 1995, n = 1050; 1996, n = 959; 1997, n = 1098; 1998 = 1142) were asked to complete a questionnaire on their first day of recruitment. Recruits were asked about their attitudes towards personal organ donation and that of close relatives. In 1998, the questionnaire was more extensive and asked for detailed information (68 closed questions) concerning:

  • • 
    their personal opinion about organ donation (preferred form of consent required to donate organs, acceptance of living donation, legalization of donor clubs with priority for receiving organs, permission to sell or buy organs, xenotransplantation, genetic interventions for organ donation) and presumed opinion of close family members towards the donation of their organs;
  • • 
    their level of information about organ donation (knowledge about the size of waiting lists and organs most in need, impression of personal information about the subject and necessity of information campaigns);
  • • 
    the factors potentially influencing their opinion (profession or educational level of father, parental relationship, personal or parental health situation, personal thoughts about death and dying, experience with incurable diseases in the family and belief in immortality or another form of life after death).

Data were not used for military purposes and were collected and analyzed independently.

Replies were evaluated using Statistical Package for the Social Sciences software (SPSS, Cary, NC). Data are presented here as numeric values (n) or mean percentages with ranges. Statistical comparisons were performed by means of cross-tabulations with Pearson's chi-square (χ2) test. A p-value < 0.05 was considered significant.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

Compliance

All recruits (n = 7272) returned the questionnaire. The percentage of nonresponders for single questions ranged between 0.6% (address) and 8.9% (professional status of father).

Decision to donate organs

Within the observation period 1989–98, on average 61% (53.2–65.3) of respondents were willing to donate their own organs in the case of brain death, 13% (9.9–15.3) refused and 26% (20.8–32.1) were undecided. Fifty per cent (47.7–51.3) of recruits would have agreed to donate organs of close family members if they had to decide, 13% (9.8–15.8) would not and 37% (34.2–39.9) were undecided. The distribution between the different decisions did not vary significantly over the 10-year period (Table 1).

Table 1. Distribution of responses concerning the decision to donate organs in case of brain death in the years 1989–98
  1989 (n = 1662)1992 (n = 1361)1995 (n = 1050)1996 (n = 959)1997 (n = 1098)1998 (n = 1142)Total (n = 7272)
Willing to donate organs personally (%)
 Yes62.760.962.965.353.263.961.5
 No11.513.111.59.914.715.312.7
 Undecided25.826.025.624.832.120.825.9
Would agree to organ donation in next of kin (%)
 Yes50.250.050.351.347.750.149.9
 No12.015.69.89.815.015.813.0
 Undecided37.834.439.938.937.234.237.1

Personal attitude towards living donation

From the questionnaire in 1998 (n = 1142), 66% of men would have been willing to donate a kidney to a family member, as opposed to 9% who would refuse; 25% were unsure: for 14% the decision to donate a kidney depended on the situation, and 11% didn't know how they would react. If a friend or partner needed a kidney, 56% of respondents would donate an organ, 9% would oppose, for 21% the decision depended on the situation, and 14% didn't know.

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

image

Figure 1. Living donation: willingness to accept a kidney from a close next of kin (n = 1142).

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Every third recruit would personally ask a close next of kin for a kidney if he needed an organ, one in four would prefer a request from his family doctor and one-third didn't want anybody to ask his next of kin (Figure 2).

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Figure 2. Living donation: ‘In the case you needed a kidney for transplantation whom do you want to ask, a next family member or friend for an organ?’ (n = 1142).

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One-quarter of respondents said they would agree to legalization of donor clubs which gave priority for organ transplantation between the members of these associations, one-quarter rejected such a proposal and one-half of recruits couldn't decide. Every fourth man would accept the legalization of selling organs to unknown persons, in contrast to almost every second who would refuse such a proposal (Figure 3).

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Figure 3. Living donation: ‘Would you support the legalization of donor clubs or the sale of organs?’ (n = 1142).

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Personal attitude concerning xenotransplantation and genetic therapy for organ donation

More recruits would refuse a xenograft than would accept one: every third young man would not take an organ from an animal, e.g. a porcine heart, even if no human organ was available and his life was at risk. A quarter of recruits thought they would have identity problems after the transplantation of an animal organ (Figure 4). Sixty per cent feared that scientific development in the field of genetics could become dangerous for the future of mankind. One-quarter of responders supported scientific studies trying to create genetically modified animals with the objective to serve as organ donors in case of need, in contrast to one-half who would not agree to such procedures (Figure 5).

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Figure 4. Xenotransplantation: perceptibility and psychological concerns (n = 1142).

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image

Figure 5. Genetic interventions on animals for organ donation: opposition and fears (n = 1142).

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Fixation of will regarding organ donation

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

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Figure 6. Brain death donation: fixation of will and information of close next of kin (n = 1142).

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Six per cent of recruits personally carried a donor card and 15% would sign one if it was handed to them; 77% of responders neither had a donor card nor would they sign one.

Fourteen per cent of recruits would agree to a law mandating organ donation in the case of brain death, 64% would disagree. If they had to choose, 52% of respondents supported an explicit consensus model of agreement to organ donation, as opposed to 16% who preferred a presumption solution and 32% who couldn't decide on the two options (Figure 7).

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Figure 7. Brain death donation: preferred type of consent (n = 1142).

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Eighteen per cent would support a policy by which persons who 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 insufficiency in the number of donors, 11% thought that there were about enough donors and 40% did not know. Fifty-one per cent of respondents had no idea about which organ is most in need for transplantation, while 80% felt they personally were badly (or not at all) informed about the problems of transplantation and the donation of organs. Fifty-two per cent of men had the impression that the general public was incompletely informed about the topic of organ transplantation, in contrast to 45% who believed that there was sufficient information. Sixty per cent thought that a national information campaign about the subject would be helpful to better inform the population, while 13% disagreed with this proposal. Twenty-one per cent of respondents personally knew at least one person who was waiting for an organ or who had received one.

Factors influencing the perception of organ donation (Tables 2–7)

Table 2. Willingness to donate organs personally depending on the information about the subject (n = 1142). Data are n (%); p < 0.0001 (chi-square)
 Feel themselves to be sufficiently informedInsufficiently (or not at all) informed
Willing to donate organs165 (14.5)565 (49.5)
Unwilling to donate organs23 (2.0)152 (13.5)
Not sure/no opinion36 (3.0)201 (17.5)
Table 3. Willingness to donate organs personally depending on whether they had informed close next of kin about their personal attitude towards the donation of organs (n = 1112). Data are n (%); p < 0.0001 (chi-square)
 Had informed close next of kinHad not informed close next of kin
Willing to donate organs331 (30)378 (34)
Unwilling to donate organs66 (6)107 (10)
Not sure/no opinion60 (5)170 (15)
Table 4. Willingness to donate organs personally depending on school level (n = 1088). Data are n (%); p < 0.0001 (chi-square)
 Low school levelMedium school levelHigh school level
Willing to donate organs293 (27)137 (12.5)260 (24)
Unwilling to donate organs101 (9.5)36 (3)31 (3)
Not sure/no opinion112 (10.5)45 (4)73 (6.5)
Table 5. Willingness to donate organs personally depending on the belief in some kind of life after death (n = 1142). Data are n (%); p = 0.0002 (chi-square)
 Do believeDo not believeDon't know
Willing to donate organs344 (30)161 (14)225 (19.5)
Unwilling to donate organs64 (5.5)49 (4.5)62 (5.5)
Not sure/no opinion84 (7.5)46 (4)107 (9.5)
Table 6. Willingness to donate organs personally depending on previous contact with transplanted persons (n = 1115). Data are n (%); p < 0.015 (chi-square)
 Had previous contact with transplanted personsDid not have previous contact with transplanted persons
Willing to donate organs171 (15)538 (49)
Unwilling to donate organs28 (2.0)146 (13)
Not sure/no opinion40 (3.5)192 (17.5)
Table 7. Willingness to donate organs personally depending on former thoughts about dying (n = 1120). Data are n (%); p = 0.008 (chi-square)
 OftenSometimesNever
Willing to donate organs201 (18)430 (38.5)89 (8)
Unwilling to donate organs55 (5)83 (7.5)35 (3)
Not sure/no opinion51 (4.5)140 (12.5)36 (3)

A significantly higher agreement to donate their organs was found among men: (i) who felt they were sufficiently informed about the subject of transplantation (p < 0.0001); (ii) who had already informed their next of kin about their personal attitude towards the donation of organs (p < 0.0001); (iii) who had a higher school level (p < 0.001); (iv) who believed in some kind of life after death (p < 0.0001); (v) who had previously had contact with transplanted persons (p < 0.015); or (vi) who had had former thoughts about dying and personal death (p < 0.01). The attitude towards organ donation did not depend on the district of domicile, the living status of the father, the personally estimated intensity of religious feelings or the existence of ill family members without chance for cure.

Agreement to donate organs where recruits had to decide for close next of kin showed similar statistical dependencies (Table 8, other data not shown).

Table 8. Willingness to donate organs in next of kin depending on the information about the subject (n = 1142). Data are n (%); p < 0.003 (chi-square)
 Feel themselves to be sufficiently informedInsufficiently (or not at all) informed
Willing to donate organs133 (11.5)439 (38.5)
Unwilling to donate organs27 (2.5)153 (13.5)
Not sure/no opinion64 (5.5)326 (28.5)

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

Clinical transplantation remains dependent upon the availability of much needed organs, and in most cultures organ donation has been accepted as an act of altruism stimulated by a sense of moral obligation (12,21,24,37–39), expressed freely and without any form of economic or other pressure (40).

In spite of the right of a free decision, individuals in reality often do not fix their will regarding organ donation (14,29). Although a great majority of individuals would accept an organ in the case of need, too few persons place their organs at disposal (6,41,42). The steadily growing number of patients waiting for an organ has stimulated wide efforts in the last 20 years to increase public commitment to organ donation (1,14). The efficacy of different public educational campaigns, however, is under debate (10,23–25).

We interrogated all 19-year-old men within a well defined region in central Europe, the Italian-speaking part of Switzerland. The compulsory day of recruitment offered the possibility to include every single 19-year-old male subject in the area under investigation. By this approach we addressed the relevant problem of nonresponders, e.g. for mail surveys (29), which counterbalances the disadvantage of not including females in the survey. Indeed, public surveys to date have not shown any major gender differences in attitude to organ donation or transplantation (14,29,43). Furthermore we tried to minimize potential attitude/behavior incongruences by using an anonymous questionnaire, avoiding any institutional pressure or moral obligation for participants.

This study of the attitude of young men regarding organ donation addresses four main areas: (i) the perception, (ii) the fixation of will, (iii) the level of information, and (iv) the sociodemographic and ethical factors influencing the decision to donate organs.

The perception

In a time period (1989–98) when no special information campaigns on the topic of transplantation or organ donation had been undertaken in the region under investigation, the attitude of young men regarding organ donation revealed no significant changes or evolutions. Up to two out of three Swiss-Italian recruits support organ donation – both cadaveric and living donation. Reports from northern Europe and the USA reveal a similar positive attitude (29,44).

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

The percentage of undecided has to be considered important in this context. Most reports demonstrate that few people have carefully considered organ donation. In 1993 a USA random-digit telephone survey of 1002 adults found only 12% who had decided not to donate their organs, but 58% were undecided (14). Among those who are undecided, four major groups have been described: (i) ‘hidden negatives’, i.e. people who wouldn't accept organ donation, but didn't want to say so; (ii) persons with misconceptions that can be clarified; (iii) ambivalent persons who need time and incitement for decision; and (iv) individuals remaining undecided, probably as a personality trait. It has been assumed that the first and last subgroups can be hardly at all influenced by any kind of information campaign (29).

If people are asked to decide for close relatives, the percentage of undecided increases still further. In our survey, every third respondent was not sure how to decide if asked for organ donation in a close relative, as compared to every fourth who was undecided for himself. As individuals in the majority are not informed about the will of their close next of kin, they often decide against organ donation, so as not to harm the integrity of the deceased person (11,27).

The finding that about the same percentage of respondents would donate and accept organs in case of need reveals a consistent behavior of Swiss-Italian recruits. The fact that support for living organ donation did not differ significantly from support for donation in cases of brain death suggests that the high rate of undecided might not depend on understanding of the concept of brain death but rather on transplantation per se. The unresolved emotional and communicational burdens clearly emerge if one considers, for example, that out of the 60% of respondents who would accept an organ from a family member or partner in the context of living donation, less than two-thirds would actively ask their close next of kin for donation. Open questions and fears of every second young man towards newer procedures like xenotransplantation or genetic interventions strengthen the psychological challenge in this context (45–47).

The fixation of will

  • Although almost two-thirds of recruits would donate their organs, only one out of 20 had signed a donor card and one-sixth would take one if offered. Thus, donation campaigns could rapidly realize an increase in the number of card carriers by merely handing out donor cards (29,43). Interestingly, the same percentage of young men (15%) would mandate organ donation in the case of brain death, would restrict the distribution of organs to potential donors only, or would vote for a presumption model concerning the allocation of organs. In 1984, less than 7% of Americans supported the notion of presumed consent (44,48). Because of poor donation rates this approach has been promoted again recently, provoking strong ethical debate (49,50). Although a majority of individuals preferred an explicit consensus model in the decision of organ donation, a majority had not adequately fixed their will. In the USA, only 38% of the public had made their wishes known to a family member, although 82% believed that the best way to obtain consent is for each adult to decide for him- or herself, rather than leaving this decision for the family (14). To resolve this problem, Spital (43) proposed the model of mandated choice, demonstrating in a survey of more than 400 students that, in contrast to 35% of respondents who strictly rejected a presumed consent model, only 10% opposed the concept of mandated choice.

The level of information

  • To come to an adequate decision, a critical amount of information is necessary. In our study, every second individual was clearly insufficiently informed about the subject of organ transplantation: 50% of recruits did not know either that there is a shortage of donors or which organ is most in need for transplantation. The finding that almost two out of three young adults would donate their organs, although only every one-fifth felt sufficiently informed about the subject is alarming. It is a widespread fact that the population could be better informed concerning organ donation and transplantation (7,11,43). Many information campaigns aimed to augment the number of donors, but the results are disappointing (1,3,10,12,14,29,32,35). There are no convincing reports from the medical literature supporting the idea that promotional campaigns are really able to improve public attitudes to organ donation (1,27).

Remarkably, reports on the Catalan experience and psychological studies show that besides delivering intellectual knowledge there is a need to build confidence in the organization concerned with organ donation (25,35,47).

The sociodemographic and ethical factors influencing the decision

  • The analyses of potential influencing factors also demonstrated the impressive significance of information on the decision of young adults regarding organ donation. Men who were better informed on the subject, as well as those who had previously informed their close next of kin about their will regarding the donation of organs or who had personal experiences with transplantation, were significantly more likely to donate organs. A survey of Swedish recruits found men with low intellectual and emotional capacities to be less positive about organ donation (33). We did not find that socioeconomic factors, e.g. profession or educational status of father, had a major impact on the willingness to donate.

A second remarkable finding was the more positive attitude towards organ donation among young men who believed in the possibility of life after death or who had previous thoughts about dying. Religious and cultural differences play an important role in the context of organ donation, a field that importantly concerns the integrity of body and soul. On one hand, they make brain death donation impossible (11,51), and on the other they might favour it because of altruistic arguments (12,29,39,41,52).

Evans (37) emphasizes that, for good reason, the ethical basis of organ transplantation has been, and must remain, suspect. He argues that well educated individuals and sophisticated societies are as unsure about when life ends as when it begins and concludes that in an effort to inspire altruism, it is time to make potential donors and their families aware of the severe consequences associated with the refusal to donate transplantable organs. Our results underline this statement with the need for better information and consistent behavior. Beyond that, the findings of this study are relevant in the light of the ongoing promotion of presumed consent, organ sale and xenotransplantation (53–55).

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

A majority of young adults support organ donation personally. But even those individuals who have made decisions regarding their own wishes towards organ donation have, in many cases, not informed their family accordingly. By contrast, a majority of young men do not know the attitude of their next of kin towards organ donation. If young men have to decide for close relatives in the case of brain death, a smaller number supports organ donation and the percentage of undecided increases. These data strongly support the concept that an active consensus model, i.e. the obligatory fixation of personal choice regarding organ donation, is highly likely to increase the number of committing donors. Even more important, this solution offers for everybody the maximum security that their personal decision to donate or not to donate organs will be respected. Consequently, the psychological burden for all subjects involved in the procedure of organ procurement could be minimized.

Most of all, this survey reveals an alarming lack of knowledge among 19-year-old European men about organ donation. Because of the disappointing results of public campaigns so far, new approaches are overdue. Our results suggest that better information, experiences with transplantation and reflections about life and dying have a significant impact on the decision-making of young adults. In our opinion, the integration of these findings should encourage future education initiatives. The fact that an overwhelming majority of 19-year-old men call for more information provides an attractive starting point for the development of such urgently needed policies.

Acknowledgments

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References

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

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgments
  9. References