Clin Transplantation 1999: 13: 45–50Printed in Ireland. All rights reser6ed

Correlates of support for organ donationamong three ethnic groups

McNamara P, Guadagnoli E, Evanisko MJ, Beasley C, Santiago-Delpin EA, Callender CO, Christiansen E. Correlates of support fororgan donation among three ethnic groups.Clin Transplantation 1999: 13: 45–50. © Munksgaard, 1999

Abstract: Telephone interviews about organ donation were conductedwith 4880 white respondents, 634 African–American respondents and566 Hispanic respondents. Forty-three percent (42.9%) of whites, 31.2%of Hispanics and 22.6% of African–Americans reported that they werewilling to donate their organs after their death (pB0.001). Logisticregression analysis revealed three significant correlates of willingness todonate across all ethnic groups: having had a family discussion aboutend-of-life issues; the belief that a doctor does all he or she can to savea life before pursuing donation; and concerns about surgical ‘disfigure-ment’ of a relative’s body after donation. Concerns in relation to bodydisfigurement were more prevalent among African–American and His-panic respondents (pB0.001) than among white respondents. Publiceducation should: a) stress the need for family communication aboutend-of-life issues including organ donation; b) underline the fact thatdonation is considered only after all efforts to save the life of thepatient are exhausted; and c) reassure minorities that the body of thedonor is treated respectfully and not disfigured.

Patrick McNamaraa,Edward Guadagnolib, MichaelJ Evaniskoa, Carol Beasleya,Eduardo A Santiago-Delpinc,Clive O Callenderd andElaine Christiansene

a The Partnership for Organ Donation, 2Oliver Street, b Department of Health CarePolicy, Harvard Medical School, Boston,MA, c Puerto Rico Transplant Program,Auxilio Mutuo Hospital, San Juan, PuertoRico, d Department of Surgery, HowardUniversity College of Medicine, Washington,DC, e The Gallup Organization Inc., Lincoln,Nebraska, USA

Key words: end-of-life decisions – ethnicity– organ donation – organ procurement –race – transplantation

Corresponding author: Patrick McNamara/Carol Beasley, The Partnership for OrganDonation, 2 Oliver Street, Boston, MA02109-4901. Tel.: +1 617 4825746;fax: +1 617 4825748;e-mail: info@organ-donation.org

Received in revised version 17 September1998

Transplantation is the preferred treatment formany individuals with end stage organ failure, yetfull access to transplant therapy is limited by thepersistent shortage of organ donors (1, 2). Thescarcity of suitable organs for transplant dispro-portionately influences the accessibility of trans-plant therapy for ethnic minorities. While nearlyhalf of the patients on transplant waiting lists areethnic minorities, they are less likely than whites toreceive a transplant and they wait longer thanwhites for the transplants they do receive (3, 4).The median waiting time in 1993 for kidneys was573 days for whites, 879 days for Hispanics, and1082 days for African–Americans (5).

Although the reasons for the disparity in accessto transplantation are complex (3, 5), one factorthat limits access for minorities is that minoritiesare less likely than whites to donate organs. Theconsequences of lower donation rates among mi-

norities is seen most clearly in the case of kidneytransplants. Because whites donate most of theavailable kidneys, racial differences in the frequen-cies of ABO blood groups and the major histocom-patibility complex antigens ensure that availablekidneys are allocated to whites more often than tomore poorly matched minority patients. If minor-ity donation rates could be significantly increasedover the current rate, these inequalities in the allo-cation of scarce organs could be more effectivelyaddressed.

In order to develop better methods to increaseorgan donation rates among ethnic minorities, weneed a better understanding of whether the corre-lates of donation support are similar or differentacross ethnic groups. Callender and his colleagues(6–9), as well as Creecy and Wright (10) andCreecy et al. (11), have studied donation supportpatterns in the African–American community.

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Callender found that support was related to lowlevels of trust in the medical establishment, fearof premature death (the ‘biased care concern’), aperception of bias in recipient selection and reli-gious concerns. Similarly, Creecy et al. (10, 11)found that lack of trust in the medical establish-ment influenced support levels, as did perceivedbias in the selection of transplant recipients, per-ceived need for transplants among African–Americans, and willingness to accept a transplantoneself.

Studies on barriers to donation among Hispan-ics have also emphasized distrust of the medicalestablishment, language differences, religious is-sues, concerns about mutilation of the donor’sbody and other concerns (12–17). These investi-gations into donation support within minoritycommunities, although not involving large andrandom samples, were crucial in uncovering thesalient donation-related issues within each com-munity.

In this study, we analyze responses from a rep-resentative sample of 6080 individuals to a 1993Gallup survey on attitudes and beliefs about or-gan donation to further explore correlates of do-nation support in light of factors that have beenidentified by earlier investigators.

Methods

The survey was conducted in 1993 by the GallupOrganization Inc., in collaboration with The Part-nership for Organ Donation, the Harvard School ofPublic Health and 17 Organ Procurement Organi-zations (OPOs) across the United States (18). Tele-phone interviews were conducted in December of1992 and January of 1993 and took an average of13 min to complete. A stratified, list-assisted ran-dom digit design was used to select households. Anadult was randomly selected from among all adultsin a household using the most recent birthdaytechnique. Hispanic and African–American tele-phone households were disproportionately sampledto provide stable estimates for racial/ethnic groups.Data were then weighted to correct for unequalselection probabilities at the sampling, householdand individual level. The final weighted data aredemographically representative and, within statisti-cal error ranges, reflect the attitudes and beliefs ofadults living in households with telephones in theUnited States at the time of the survey.

Survey content

The survey was designed to sample beliefs, atti-tudes and knowledge concerning organ donation.

We classified respondents into two dichotomousgroups based on their response to the followingquestion: How likely are you to want to ha6e yourorgans donated after your death? Would you say6ery likely, somewhat likely, not 6ery likely or notat all likely? If respondents answered ‘very likely’they were classified as willing to donate. Allother respondents were grouped into a ‘lesslikely’ category.

Other survey questions assessed demographiccharacteristics of respondents, dispositions to en-gage in end-of-life discussions with family mem-bers, knowledge about the mechanics ofbecoming a donor and perceptions or concernsabout the donation system in general.

We derived three ‘index scores’ from items inthe survey. The knowledge index was composedof the following two items: A person must carryan organ donor card to be a donor. Next of kinmust gi6e permission for donation to occur. Theequity index was composed of the following threeitems: Gi6en equal need a poor person has as gooda chance as a rich person of getting an organtransplant. There is a black market in organs inthe US. Racial discrimination pre6ents minoritypatients from recei6ing the organ transplants theyneed. The body disfigurement index was com-posed of the following two items: Are you wor-ried that a lo6ed one’s body would be disfigured iftheir organs were donated? It is important for aperson’s body to ha6e all of its parts when it isburied. For each statement, the respondent wasasked to indicate agreement or disagreement. Foreach index, we combined the responses for therelevant items and converted the summed scoreto a range between zero (low concern about bodydisfigurement, low concern about equity issues)and 100 (high concern about body disfigurement,high concern about equity issues etc.).

Analysis

We compared the demographic characteristics ofrespondents in each ethnic group using chi-squaretests for categorical variables and analysis ofvariance (ANOVA) for continuous variables. Weused logistic regression analysis to assess the infl-uence of the several independent variables, aswell as the index scores listed above on willing-ness to donate, controlling for age, gender andeducation. We performed a separate logistic re-gression analysis for each of the three ethnicgroups to determine whether the correlates ofwillingness to donate varied across the threegroups.

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ResultsSample (Table 1)

Interviews were conducted with 6080 respondents(45% of the eligible sample). There were 4880 whiterespondents, 634 African–American respondentsand 566 Hispanic respondents. Forty-three percent(42.9%) of whites, 31.2% of Hispanics and 22.6%of African–Americans reported that they werevery willing to donate their organs after their death(pB0.001). White respondents were on average4–6 years older than African–American or His-panic respondents (pB0.001). Twenty percent ofwhites, 12% of African–American and 10% ofHispanic respondents were college graduates (pB0.001). About 10% of respondents in each groupworked in the health care profession (NS).

A significantly greater percentage of whites ascompared to African–Americans or Hispanics a)saw information about donation in the year previ-ous to the survey (whites, 60%; African–Ameri-cans, 43%; Hispanics, 46%; pB0.001); b) haddiscussed death arrangements with their families(whites, 41%; African–Americans, 33%; Hispanics,26%; pB0.001); and c) agreed that doctors do allthey can to save a life before pursuing donation(whites, 92%; African–Americans, 81%; Hispanics,88%; pB0.001), and knew that a brain-dead per-son was dead and could not recover (whites, 66%;African–Americans, 55%; Hispanics, 56%; pB0.001). A significantly greater percentage of whites(36%) and Hispanics (41%) as compared toAfrican–Americans (18%) reported that thinkingabout death was uncomfortable for them (p=

0.028). A significantly greater percentage of whites(59%) and African–Americans (56%) as comparedto Hispanics (51%) knew that families did notincur extra costs if donation occurs (p=0.002).

There were no significant differences in meanknowledge index scores across the three groups(p=0.44). Hispanics reported slightly higher levelsof concern about equity as evidenced by scores onthe equity index (mean score=53, SD=20) ascompared to African–Americans (mean score=50, SD=20) or whites (mean score=50, SD=20;p=0.02). African–Americans (mean score=40,SD=22) and Hispanics (mean score=40, SD=22) reported significantly higher levels of concernabout body disfigurement as compared to whites(mean score=27, SD=22; pB0.001), as evi-denced by scores on the body disfigurement index.

Correlates of willingness to donate across groups

Adjusted odds ratios and 95% confidence intervalsfor correlates of willingness to donate organs afterdeath are summarized for each ethnic group inTable 2. Three factors were significantly predictiveof willingness to donate across all three ethnicgroups: having had a discussion about death ar-rangements with family; agreement with the state-ment that ‘doctors do all they can to save a lifebefore pursuing donation’; and concerns aboutbody disfigurement.

Respondents in all three ethnic groups who dis-cussed death arrangements with their families weremore likely to be willing to donate than those whodid not have the discussion (Table 2). The size of

Table 1. Sample characteristics by ethnic group

Characteristic White (n=4880) African–American pHispanic (n=566)(n=634)

278 (44)2344 (48)Male, n (%) 0.007239 (42)Age, mean (SD) 43 (15) 39 (15) 38 (15) B0.001

Education, n (%)BHigh school 547 (11) 136 (22) B0.001200 (35)

208 (37)254 (40)2017 (41)High school —Some college 1350 (28) 162 (26) 98 (17) —College graduate 958 (20) 78(12) 59 (10) —

Works in the health care profession, n (%) 485 (10) 67 (11) 57 (10) 0.87B0.001263 (46)273 (43)2909 (60)Saw information about donation in the past year, n (%)B0.0011986 (41)Discussed death arrangements with family, n (%) 210 (33) 144 (26)B0.001500 (88)512 (81)4492 (92)Agrees doctors do all they can to save a life before pursuing donation,

n (%)348 (55)3214 (66) B0.001Knows brain-dead person cannot recover, n (%) 316 (56)

0.028Thinking about death is uncomfortable, n (%) 1739 (36) 242 (18) 232 (41)Family does not have to pay extra bills if donation occurs, n (%) 2867 (59) 357 (56) 289 (51) 0.002Knowledge about donation decision, mean (SD) 0.4439 (33)37 (33)37 (33)

0.0253 (20)50 (20)50 (20)Equity, mean (SD)Body disfigurement concerns, mean (SD) 27 (22) 40 (22) 40 (22) B0.001

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Table 2. Adjusted odds ratios (and 95% confidence intervals) for correlates of saying very likely to donate organs after death, by ethnic group

Variable African–American HispanicWhite

0.9 (0.6, 1.4) 1.2 (0.8, 1.8)Male 1.1 (0.9, 1.2)0.99 (0.98, 1.00)Age 1.0 (0.9, 1.0)0.99 (0.98, 0.99)

EducationReference group Reference groupBHigh school Reference group

0.7 (0.4, 1.2)1.3 (1.1, 1.8) 1.2 (0.7, 2.1)High schoolSome college 2.1 (1.7, 2.8) 0.6 (0.3, 1.2) 1.4 (0.7, 2.5)

2.6 (2.0, 3.4) 1.3 (0.6, 2.8)College graduate 1.8 (0.9, 3.8)

0.9 (0.7, 1.2) 1.5 (0.7, 2.9)Works in the health care profession 0.4 (0.2, 0.9)0.8 (0.5, 1.3) 1.6 (1.03, 2.5)Saw information about donation in the past year 1.7 (1.5, 2.0)

2.8 (1.8, 4.5)1.8 (1.1, 2.8)1.6 (1.4, 1.9)Discussed death arrangements with family1.6 (1.3, 2.1) 3.8 (1.8, 7.9)Agrees doctors do all they can to save a life before pursuing donation 3.2 (1.5, 6.8)0.7 (0.6, 0.8) 0.7 (0.4, 1,1)Knows brain-dead person cannot recover 0.5 (0.3, 0.8)

1.0 (0.7, 1.6)0.7 (0.4, 1.2)0.5 (0.4, 0.6)Thinking about death is uncomfortableFamily does not have to pay extra bills if donation occurs 1.1 (0.9, 1.2) 0.9 (0.6, 1.5) 1.5 (0.9, 2.3)

1.01 (1.00, 1.01) 1.02 (1.01, 1.03)Knowledge about donation decision 0.99 (0.98, 1.0)1.0 (0.9, 1.0)1.01 (1.00, 1.01) 0.98 (0.97, 0.99)Equity0.96 (0.95, 0.97) 0.98 (0.97, 0.99)Body disfigurement concerns 0.96 (0.96, 0.97)

the association did not differ between groups (95%CIs overlapped). Whites were 60% more likely,African–Americans 80% more likely and Hispan-ics 2.8 times as likely to be willing to donate if theyhad discussions with their families (compared torespondents in each ethnic group who did notdiscuss death arrangements).

Respondents in each ethnic group were signifi-cantly more likely to be willing to donate if theyagreed with the statement that ‘doctors do all theycan to save a life before pursuing donation’.Whites were 60% more likely, African–Americanswere 3.8 times as likely and Hispanics were 3.2times as likely (compared to respondents in eachethnic group who did not agree that doctors do allthey can to save life before pursuing donation) tobe willing to donate. Once again, the size of theassociation did not differ between groups.

Respondents in each ethnic group were signifi-cantly less likely to be willing to donate if they hadconcerns about disfigurement of the body. The sizeof the association did not differ between groups.

Correlates of willingness to donate within groups

If an African–American respondent had worked inthe health care profession, they were significantly(60%) less likely to be willing to donate thanAfrican–American respondents who did not workin the health care professions. Whites and Hispan-ics who saw information about donation in thepast year were significantly more likely to be will-ing to donate (whites 70%; Hispanics 60%) thanrespondents in each group who had not seen infor-mation in the past year. While equity concernswere significantly predictive of support for whites

and non-support for Hispanics, there was no sig-nificant association between equity concerns andsupport for African–Americans. Whites, but notAfrican–Americans or Hispanics, who said thatthinking about their own death makes them un-comfortable were 50% less likely than others to saythey would very likely want to donate.

‘Knowledge about the donation decision’ wassignificantly associated with support for whites andAfrican–Americans, but not for Hispanics. Higherscores on the knowledge index were associatedwith an increased willingness to donate. Whitesand Hispanics who knew that a person could notrecover from brain death were less likely to bewilling to donate than respondents who did notknow a person could not recover from brain death.

Discussion

In the largest survey on organ donation yet con-ducted of a representative sample of white,African–American and Hispanic individuals, weidentified several significant correlates of willing-ness to donate one’s own organs. Three factorswere strongly associated with willingness to donateacross all three ethnic groups: the belief that adoctor does all he or she can to save a life beforepursuing donation; family discussion about end-of-life issues; and concerns about surgical ‘disfigure-ment’ of a relative’s body after donation.

Belief that doctors put life-saving before organprocurement was strongly related to willingness todonate in all three groups of respondents. Hispan-ics and African–Americans were between threeand four times more likely to be willing to donateif they believed that doctors do all they can to save

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a life before pursuing donation. While at least 80%of respondents in all three groups agreed thatdoctors do all they can to save a life before pursu-ing donation, minorities were significantly lesslikely than whites to endorse that belief. If evenone family member shows mistrust of the medicalstaff, it may be enough to derail donation.

These findings are congruent with those of Cal-lender and his associates, who have shown thatproblems of trust and worries about prematuredeath are significant barriers to support for dona-tion in the African–American community. Callen-der has also shown that these trust issues can beeffectively addressed in the African–Americancommunity via community outreach programs, fo-rums, focus groups and other grass-roots educa-tional efforts (7–9). Public education andawareness campaigns directed at minority commu-nities may increase their effectiveness by explicitlytailoring their messages to respond to concernsabout trust and bias in the donation/transplanta-tion system (19). Hospital staff who participate inrequests for donation need to proactively respondto minority concerns about trust and bias if dona-tion is to become a real option for them.

Family discussion about death arrangementswas correlated with willingness to donate across allthree ethnic groups. Unfortunately, less than 40%of respondents in each ethnic group (only 26% ofHispanic respondents) had had such discussionswith their families. Between 20 and 40% of allrespondents also reported that thinking aboutdeath made them uncomfortable. This discomfortmay be related to the absence of family discussionsabout advance directives for end-of-life care. Han-son and Rodgman (20) found that poorly educatedminorities and the underinsured were less likely toprepare advance directives or living wills.

It is unclear why Hispanics are more reluctantrelative to whites and African–Americans to dis-cuss death arrangements within the family. Ex-tended family structures may make decision-making more diffuse and difficult. Familial deci-sion-making processes may also vary with the cul-tural background of the family. Despite thesimilarities in language and heritage, Hispanics arenot a homogenous population in the United States.Thus, New York Puerto Ricans are different fromMiami Cubans and Salvadorians and from Mexi-cans in Texas and in California. These differencesmay help to explain, in part, variations in end-of-life discussions and donation-support patternsamong these populations (16, 17).

The pervasive concern expressed by respondentsin all three groups about bodily disfigurement ofthe organ donor also needs to be addressed. Mean

body disfigurement index scores were significantlyelevated in the two minority groups as comparedto whites, suggesting that this particular issue maybe a more salient concern for African–Americanand Hispanic families than for white families. It isunclear whether concerns about disfigurement andmutilation are related to worries that an opencasket funeral would not be possible if the bodywere surgically disfigured. Another possibility isthat families may feel that further surgical proce-dures on their relative’s body may indicate disre-spect for the body.

Knowledge about the mechanics of the donationdecision was related to willingness to donate.Roughly equal proportions of respondents in eachgroup who knew about the mechanics of the dona-tion decision also supported donation. Knowledge,however, was not the only variable associated withwillingness to donate. Although higher scores onthe knowledge (of donation decision) index wereassociated with willingness to donate, there wereno significant differences in mean knowledge indexscores across the three ethnic groups, despite thefact that willingness to donate varied substantiallyacross the three groups.

A related finding concerned knowledge aboutbrain death. Fully a third of the white respondentsand nearly half of minority respondents did notagree with the statement that ‘brain death is deathand no recovery is possible’. Those who did agreewith this statement (i.e. who evidenced accurateknowledge of brain death) were nevertheless lesslikely to be willing to donate than respondents whodid not agree with the statement. Horton andHorton (21) uncovered a similar anomaly in theirwork on modeling attitudes and beliefs aroundwillingness to donate. They found that accurateknowledge about brain death did not always pre-dict willingness to donate.

Exposure to information about donation in theyear previous to the survey was associated withwillingness to donate, at least among whites andHispanics. Whites were significantly more likely toreport such exposure than African–Americans orHispanics. It is not clear why the relationshipbetween exposure to recent information on dona-tion and support for donation did not hold forAfrican–Americans. Further research is needed toexplore the sources and content of informationabout donation in African–American communi-ties. The finding that African–American healthcare workers were less likely to be willing to donatethan their non-health care worker counterpartsmay be important here, because health care work-ers are major conduits of information about healthcare options in their communities. Support for

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donation in the African–American communitymay be influenced by the testimonies of blackhealth care workers.

Although our results confirm reports of rela-tively low levels of support for donation amongethnic minorities in the United States, non-supportfor donation appears to be related to a small set ofeasily identifiable factors – among them trust inthe medical establishment and concerns that thedonor body be properly cared for. It seems reason-able to suggest that these concerns be directlyaddressed in both public education campaignsaround organ donation and in specific donationrequests to potential donor families. Public educa-tion campaigns can reinforce the need for familydiscussions about end-of-life care, as well as organdonation. Concerns about body disfigurement andpremature death will be most effectively addressedin critical care settings when families are ap-proached for donation.

Our goal in this paper has been to better under-stand the correlates of donation support withinminority communities in the United States. Wehave identified several predictors of support fordonation within these communities. The task nowis to translate this information into better, moreinformed public outreach campaigns, as well asmore effective and sensitive request practices onthe hospital floor.

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