I Original Research

Psychosocial variables associated with willingness to donate organs

Barbara E. Nolan, BA Nicholas P. Spanos, PhD

Questionnaires were administered to 108 university psychology students to investigate attitudes and behaviour related to organ donation. Three groups (committed, uncommitted and opposed) were identified. A multivariate analysis of variance showed that, compared with uncommitted donors, committed donors felt better informed about organ donation, had discussed donation more often with family members and knew more people who had signed donor cards. The subjects in the opposed group and those in the uncommitted group cited different reasons for not signing a donor card. Empathy, religious beliefs and attitudes about death did not affect willingness to donate. Analyses of the interaction between willingness to donate one's own organs and willingness to donate those of a family member revealed a monotonic increase in willingness to donate the organs of a family member as the type of recipient became more personally relevant. Our findings indicate that when health care professionals request donor organs the potential recipients must be presented to the potential donors in a personally relevant manner. Educational programs must be developed to train medical personnel in how to effectively ask for organs without coercing the potential donor or invading the privacy of the potential recipient.
On a demandd k 108 Etudiants universitaires en psychologie de repondre d des questionnaires sur leurs attitudes et leur comportement evenMs. Nolan is a graduate student and a member of the part-time teaching staff in the School of Psychology, University of Ottawa, and Dr. Spanos is a professor in the Department of Psychology, Carleton University, Ottawa.

tuel devant le don d'organes. Ils forment trois groupes: engages, partisans mais non engages, opposants. L'analyse des variables multiples montre que par rapport aux non engages les engages se croient mieux informes de la question du don d'organes, en ont plus souvent parle en famille -et connaissent plus de gens qui ont signe la carte de donneur. Les raisons pour lesquelles celle-ci n'a pas ete signee diffterent chez les opposants et les partisans non engages. Ni le degre de sympathie du sujet, ni ses croyances religieuses, ni son attitude devant la mort n'influent sur son desir de donner ses propres organes. Celui de donner les organes des membres de sa parente montre un rapport monotone avec la nature des liens personnels qui rattachent le repondeur au receveur eventuel. Aussi celui-ci devrait-il etre represente k la lumiere de ces liens par le professionnel de la sante qui demande le don d'organe. Il faut mettre au point les moyens d'enseigner au medecin comment l'obtenir sans exercer de coercition sur le donneur eventuel, tout en respectant la discretion envers le receveur eventuel.

Reprint requests to: Barbara E. Nolan, School of Psychology, University of Ottawa, 651 Cumberland Ave., Ottawa, Ont.
KlN 6N5

S ince the first therapeutic organ transplant was performed, in Boston in 1954,1 transplantation has become a common treatment for conditions that previously were fatal.2'3 Advances in medical technology and the development of antirejection drugs such as cyclosporine4-6 have reduced the technical problems previously faced by transplant teams. A shortage of available organs, however, remains a serious problem. It is estimated that about one-third of patients accepted for a transplant die while waiting for a suitable organ.7 According to the US Centers for Disease Control, Atlanta, only about 10% of suitable organs are retrieved from potential donors.7 Complex reasons have been postulated to explain the discrepancy between the need for organs and the number of organs retrieved. Some
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factors are attributed to the medical community, others to the attitudes and behaviours of potential donors. Doctors cite fear of litigation8'9 and a hesitance to request organs from families who are grieving the loss of a loved one.10-14 According to the Canadian Medical Protective Association, fear of litigation is unfounded: to date, no legal action has ever been brought against a Canadian doctor regarding his or her conduct pertaining to organ transplantation (Dr. Stuart Lee: personal communication, 1988). Similarly, in the United States medicolegal actions related to organ transplantation are
rare.3 Evidence also indicates that physicians' fear about intruding into the grief of a mourning family is unwarranted. This fear is usually expressed by physicians who have little experience in requesting donor organs. Medical personnel who have approached families typically report that their experiences were positive. Thus, a physician's fear of intruding into the family's grief is likely to stem from a lack of training in how to approach a grieving family and how to sensitively ask for donor organs."5 This is regrettable: numerous anecdotal reports16-'8 and an empiric investigation19 suggest that donor families are helped by knowing that some measure of good has resulted from the death of a family member. It is clear that despite the unfounded fears about litigation and intrusion into the grieving process, health care professionals typically fail to request organs.20-22 With respect to potential donors, people who report that they are unwilling to donate or undecided about donating organs frequently attribute their behaviour to a fear of premature declaration of death, fear that physicians will fail to institute lifesaving measures on their behalf,23'24 discomfort in thinking about death, fear of mutilation or a desire to comply with the wishes of family members.24 26 Intensive care nurses have been reported to hold similar beliefs,27 which indicates that these rationales represent something other than simple lack of information. Public opinion polls have shown that the general public is aware of the overall issues of organ donation. In 1987 the Gallup Organization determined that 99% of Americans surveyed had heard of or read about organ transplants.28 McIntyre and colleagues29 noted that 99.3% of their sample of university students had heard about organ donation; although 78.1% believed there were thousands of Americans awaiting organ transplants, only 13.1% had signed donor cards. These findings indicate that recognizing the need for organs and taking action to alleviate the shortage are separate issues. The findings of McIntyre and colleagues29 are consistent with the results of earlier investigations. Despite the high proportion of people who view organ donation positively, there is wide variability in the numbers of people who actually sign donor cards.28'30 The reported proportion of people who sign donor cards has ranged from 10%31 to 67%32
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of those surveyed. Prottas33 noted that a decrease in willingness to donate was observed when the organ donation behaviour was more specifically defined: 72% of those sampled reported that they supported the global notion of organ donation, but only 50% would donate the organs of their child and only 24% their own kidneys. Two Gallup surveys revealed similar findings: of those who had heard about donor cards 62% were willing to donate the organs of a family member,28 44% would donate the organs of their child,24 and 50% would donate their own organs.28 This trend is consistent with much research into attitudes indicating that actual behaviour is best predicted when the hypothetical situation closely resembles the context and target of the real-life situation in which the person is being asked to make a similar decision.34 Not all people have made a firm decision about organ donation. Manninen and Evans35 found that 53% of the people in their survey described themselves as uncertain about donating organs. These investigators suggested that most Americans felt positively about organ donation but expressed some degree of uncertainty. They suggested that if all undecided people could be persuaded to donate their organs, 80% of the US public would be classified as willing donors. Unfortunately, there is no evidence that undecided people can be persuaded to become donors. These observations illustrate two points. First, the shortage of donor organs is associated with beliefs and fears underlying the failure of the medical community to request organs. Second, among potential donors the discrepancy between support for organ donation and number of available organs is related to attitudes toward numerous personal and social issues. Little empiric research has been conducted in this area. In previous investigations into attitudes and beliefs correlated with organ donation psychometrically valid questionnaires have not been used.2429303536 As a first step in clarifying these issues we used validated psychologic instruments to assess four aspects of organ donor behaviour: whether willingness to donate organs is affected by previous exposure to organ donation issues, the importance of attitudinal factors, the reasons used by people to explain their failure to donate organs, and whether a person's willingness to donate his or her organs is related to the willingness to donate those of a family member.
Methods
Between January and April 1987, 108 psychology students (88 women and 20 men ranging in age from 19 to 43 [mean 22.5] years) at the University of Ottawa completed a battery of questionnaires for course credit. The study was described as being part of a national survey to update norms on social and health-related issues. All the

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subjects gave informed consent to participate in the study. Of the 108 students 58 were Roman Catholics, 16 were Anglicans, 4 were Presbyterians, 3 were United Church members, 2 were Lutherans, 1 was a Baptist, 4 were of other denominations, and 20 reported no church affiliation. The battery of questionnaires included a survey of the perceived health status of the subject and of immediate family members, perceived vulnerability to 12 serious illnesses and frequency of drinking and smoking, as well as a questionnaire recently constructed by one of us (B.E.N.) that assesses attitudes and behaviours associated with willingness to donate one's organs or those of a family member (available from the authors on request). The students also completed 10 validated questionnaires on theoretically meaningful correlates of organ donation, including reporting of physical symptoms,37 extraversion,38 the tendency to seek new experiences,39 social desirability,40 self-esteem,41 religious attitudes,42 empathy,43 view of the world as a just place," attitudes toward death45 and the ability to become absorbed in feelings (Auke Tellegan, University of Minnesota: unpublished data, 1976). After they had completed the questionnaires the students were informed about the real purpose of the study. Results
We analysed three aspects of organ donation: subjects' behaviours relevant to donating their own organs, reasons why subjects had chosen not to donate their own organs, and attitudes about donating the organs of family members. Previous research has indicated the presence of three types of attitudes toward organ donation: willingness, unwillingness and ambivalence.24'35 Using this model we defined three groups on the basis of attitudes and actual behaviours related to organ donation. Group 1 (opposed) (nine subjects) was defined as people who indicated quite clearly that they were opposed to organ donation. That is, in addition to rating themselves as unwilling to donate their own organs, they had not signed the donor section of their driver's licence or any other donor card. Group 2 (uncommitted) (46 subjects)

was defined as those who had rated themselves as willing to donate their own organs but who had not signed the donor section of their driver's licence or any other donor card. Group 3 (committed) (53 subjects) was defined as those who had expressed a willingness to donate their own organs and had signed either the donor portion of their driver's licence or another donor card. Variables were grouped into two general categories. The first category consisted of measures representing previous exposure to organ donation (how informed the subjects felt they were about the issues, how many people they knew who had signed a donor card and how frequently they had discussed organ donation with family members). The second category included theoretically meaningful attitudinal variables (death anxiety, belief in a just world, religious beliefs, social desirability and empathy). A multivariate analysis of variance (MANOVA) was conducted to compare the responses of the uncommitted and the committed groups. The opposed group was not included in this analysis because of the small number of subjects. The MANOVA yielded a significant difference between the groups (T2 = 42.6458, p < 0.001). The significant multivariate T2 was accounted for by the three variables in the first category (Table I): the uncommitted donors felt less informed about organ donation than the committed donors, discussed the issue less often with family members and knew fewer people who had signed a donor card. There were no differences between the two groups in attitudinal variables. The second set of analyses examined variables that affected the subjects' decision whether to sign a donor card. The subjects used a rating scale ranging from 1 (did not influence their decision at all) to 5 (strongly influenced their decision) to indicate how much their decision had been influenced by the reasons typically cited in the literature.2326 The ratings given by the opposed and the uncommitted groups were entered into a MANOVA. The variables included were fear of mutilation, fear that lifesaving measures would not be instituted, organ donation being against one's religion, opposition by family members and never having thought about donating organs. The analysis revealed a significant multivariate difference between the two groups (T2 = 30.9021, p < 0.001).

Table I - Variables that distinguished uncommitted from committed organ donors: univariate means constituting significant multivariate analysis of variance (MANOVA)
Mean score (and standard deviation [SD]); group

Variable*
Informed on issue Discussed issue with family Knew people who had signed a donor card

Uncommitted (n = 46) 1.69 (0.79) 1.24 (0.65) 1.22 (1.72)

Committed (n = 53) 2.40 (0.79) 1.72 (0.75) 1.96 (1.22)

p
< < <

12.18 5.43

0.01 0.01

13.33

0.01

*Degrees of freedom (df)

1 and 96.

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The relevant univariate means are shown in Table II. The subjects in the opposed group rated fear of mutilation and fear that lifesaving measures would not be instituted as being more influential than did the subjects in the uncommitted group. On the other hand, the uncommitted donors scored higher on never having thought about donation than did the subjects opposed to donation. The final set of analyses examined the attitudes of the subjects toward donating the organs of a family member. Using a rating scale of 1 (unlikely) to 5 (very likely) the subjects rated how likely they would be to donate the organs of a family member to four different categories of recipient: research, a stranger, an acquaintance and a family member. These four categories reflect increasing levels of personal involvement between a potential donor and the potential recipient. A mixed ANOVA with one between-factor (type of donor) and one within-factor (type of recipient) yielded a significant interaction between donor type and recipient type (F = 2.79, degrees of freedom [df] 6 and 315, p < 0.01). The mean scores by type of recipient are shown in Table III. Analyses showed that there were simple main effects at three levels of the within-factor: stranger (F = 22.86, df 2 and 283, p < 0.01), acquaintance (F = 18.47, df 2 and 283, p < 0.01) and family member (F = 3.44, df 2 and 283, p < 0.05); the three donor groups did not differ significantly in their likelihood ratings at the research level of the within-factor. Post-hoc comparisons (NewmanKeuls) between the donor groups showed that the

opposed group was significantly less likely than the uncommitted and committed groups to donate organs to a stranger or to an acquaintance (Table III). No significant differences existed between the committed and uncommitted groups at the stranger or acquaintance level. The three groups did not differ significantly in their willingness to donate organs to a family member. Simple main effects were also found at each level of the between-factor: opposed (F = 20.02, df 2 and 315, p < 0.001), uncommitted (F = 52.81, df 2 and 315, p < 0.001) and committed (F = 51.04, df 2 and 315, p < 0.001). For each of the three groups the likelihood of donating organs to a family member was significantly higher than the likelihood of donating to research or to a stranger. The opposed and uncommitted groups were also significantly more likely to donate to a family member than to an acquaintance. All three donor groups were significantly more likely to donate to an acquaintance than to research, and in no group was there a significant difference between the likelihood ratings for the acquaintance and stranger levels. Committed and uncommitted donors were significantly more likely to donate to a stranger than to research; no similar significant difference was observed for the opposed group. In general, all three donor groups demonstrated a monotonic increase in the likelihood to donate organs as the recipient category became more personally relevant. The pattern of significant posthoc comparisons of group means in Table III shows that committed and uncommitted donors

Table 1- Reasons for not signing an organ donor card: univariate means constituting significant MANOVA

Table Ill

Willingness to donate organs of a family member by category of recipient

j-

;,7

30

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were likely to donate to a family member, an acquaintance and a stranger but were uncertain about donating or unlikely to donate to research. The opposed group was unlikely to donate to any recipient other than a family member.

Discussion
The high proportion of committed donors in our study is a reflection of the demographic characteristics of the population: most were young, were female and had some university education. Previous research has shown that this group is the most likely to donate organs.2746 In addition, our study was conducted in a city where heart transplants are performed relatively frequently. Media attention often focuses on the recipients and their families as well as on the donors. This level of awareness may have contributed somewhat to the unusually high proportion of committed donors. Nevertheless, the variable that best explained why people in the uncommitted group had not signed a donor card was that they had not thought about it. This group also felt relatively uninformed about issues related to organ donation. Therefore, the influence of media attention on the signing of donor cards is likely mediated by other factors. The finding that empathy, death anxiety, and religious affiliation and beliefs did not significantly affect subjects' willingness to donate their own organs is consistent with previous research.29 Caution must be used in interpreting this lack of relation. The multidimensional nature of death anxiety47 and of being religious48 as well as the small number of subjects in the opposed group highlight the need for further research. Although we used a validated religious-beliefs questionnaire to assess the association between being religious and willingness to- donate organs, the contents of the scale are limited to traditional Christian beliefs. A more global measure might yield different results. It was a surprising finding that willingness to donate organs was not associated with social desirability or belief in a just world. Further investigation is needed to determine whether this result would persist in the presence of a larger group of subjects opposed to donating organs. In our study the uncommitted and opposed groups were influenced by different factors. Uncommitted donors reported that their failure to sign stemmed from simply not having thought about organ donation; the opposed group was more affected by a fear of mutilation, a fear that lifesaving measures would not be instituted and a belief that organ donation was against their religion. These reasons are consistent with those reported in the literature,24 but they run contrary to the common knowledge of professionals who are familiar with the donation of organs: donation is not associated with mutilation of the body, failure to institute lifesaving measures or opposition from major religions.

Because of the small number of subjects in the opposed group we could not validly determine whether these subjects felt less informed about organ donation issues than did the committed or uncommitted donors. This question requires clarification. If people opposed to donation typically rate themselves as being less informed or cite ungrounded fears, promotion of organ donation will need to incorporate strategies that directly address this lack of information or misinformation. Campaigns should highlight such aspects as supportive views of major religions, the sterile procedures that are used to remove organs and the lack of involvement of the transplant team in the emergency department care of a potential donor. If, on the other hand, people opposed to organ donation typically feel informed and still choose not to sign donor cards their decision must be viewed as an informed choice on an emotion-laden issue. Promotion of organ donor cards should then be directed at the uncommitted group. Strategies could include making donor cards readily available, offering educational programs at hospitals, community centres and high schools, and encouraging people to discuss organ donation with their families. An important issue is raised by the results of the analyses of the willingness of subjects to donate the organs of a family member. Committed and uncommitted donors were willing to donate when the recipient was identified as a stranger, an acquaintance or another family member. It is important that the opposed group did not differ significantly from the uncommitted and committed groups in their likelihood to donate to a family member. The three donor groups did not differ significantly in their lack of support for donating to research. Most organs are donated to people whom the donor does not know. Our results suggest that providing general information about one or more potential recipients might encourage a person to donate the organs of a family member. Future research must address whether the medical community would be less hesitant to request donor organs if general information about prospective recipients was presented to potential donor families. In such situations the role of health care professionals would be clearly defined: they would be acting on behalf of a small group of known potential recipients rather than requesting a donation for an anonymous cause. This practice would need to be scrutinized by hospital ethics committees to safeguard against the use of such information to coerce potential donors. In addition, the opportunity to focus on a benefit to an identified potential recipient might temper the emotional trauma and cognitive dissonance experienced by surgical teams who must terminate life-support systems after organ retrieval.49
This research was partially supported by a studentship from the Medical Research Council of Canada.
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