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Little is known about racial/ethnic differences in preferred methods of disclosing deceased organ donation intentions among persons not previously designating their organ donation preferences publicly or the association of medical mistrust with preferences.
We surveyed 307 United States (US) adults who had not yet designated their donation intentions via drivers’ licenses or organ donor cards (non-designators) to identify their preferred disclosure methods (personal discussions with family, physicians, or religious representatives or public registration via mail/telephone/computer, workplace, place of religious worship, or grocery store/bank/post office) and to assess the association of mistrust with preferences. In multivariable models, we assessed racial/ethnic differences in preferences and the influence of medical mistrust on preferences.
Non-designators most preferred discussions with physicians (65%) or family members (63%). After adjustment, African Americans (AAs) were more likely than Whites to prefer discussion with religious representatives. In contrast, AAs and Hispanics were less likely than Whites to prefer registration at a workplace or through mail/telephone/computer. Medical mistrust was common and associated with less willingness to disclose via several methods.
Encouraging donation intention disclosure via discussions with physicians, family, and religious representatives and addressing medical mistrust could enhance strategies to improve non-designators’ donation rates.
Although many persons in the United States (US) general public may be willing to donate their organs after death, they may not formally disclose their donation intentions to others, contributing to missed opportunities for donation [1–3]. Because of the opt-in nature of the current US system of deceased organ donation, it is imperative that persons wishing to donate their organs disclose these intentions to others, particularly family members, prior to death. In the US, potential donors’ family members play a very prominent role in determining whether organs are donated. In most cases, family member consent is required for donation to occur, without which, donation may not occur even if donors have previously declared their organ donor status. Recently, a few states have enacted ‘first-person consent’ or ‘donor designation’ laws that allow OPOs to procure potential donors’ organs as long as they have formally designated their donation through approved means .
Non-designation rates are particularly high among racial/ethnic minorities, who have been shown to be significantly less willing to designate their donation intentions on state drivers’ licenses or organ donor cards and to have lower rates of deceased organ donation compared to their majority counterparts [1–2, 4–6]. Non-designating potential donors’ mistrust in the medical establishment (including their fears of receiving poor medical treatment with disclosure) may influence their willingness to disclose their organ donation intentions and are more prevalent among racial/ethnic minorities [5–6].
Through its Strengthening Donor Registries Initiative, the US Department of Health and Human Services has recently focused its efforts on identifying strategies to improve donor designation among the US general public . In addition, a growing number of states have implemented novel mechanisms for donation intention disclosure, including internet-based registries maintained by regional organ procurement agencies or state agencies . To date, however, optimal strategies for improving disclosure of donation intentions among non-designating potential donors are unclear, in part because preferences of non-designators are not well understood. The extent to which preferences for different methods of disclosure might differ among racial/ethnic groups or might be influenced by mistrust of medical providers or the healthcare industry in general is also unknown. Identification of non-designators’ preferred strategies for disclosure and ascertainment of potential racial/ethnic differences in preferences could help guide new initiatives to improve deceased organ donation rates overall and to narrow racial/ethnic disparities in donation. Exploration of the potential influence of medical mistrust on disclosure preferences could further aid efforts to improve donation rates by elucidating potential strategies for enhancing disclosure among those who are significantly less likely to designate their donation preferences via conventional methods.
In a national study of US-based adults who had not previously designated their donation intentions, we explored preferred strategies for disclosure of donation intentions, racial/ethnic differences in preferences, and the influence of medical mistrust on preferences. We hypothesized a priori that preferences regarding potential methods for disclosing donation intentions would vary according to race/ethnicity. We further hypothesized that the association of medical mistrust with donation disclosure would vary among persons of different races or ethnicities.
As part of a national cross-sectional study of US adults (aged 18–75 years) performed (from May 2004 to August 2005) to study public attitudes about live and deceased organ donation, we assessed preferences for various methods of disclosing their deceased organ donation intentions. As described previously, we randomly selected study participants from households identified using random digit selection of telephone numbers . We performed additional oversampling to enrich responses from African American and Hispanic participants. We performed the oversampling in all 4 US census divisions. We oversampled African Americans and Hispanics in proportion to the density of households inhabited by African Americans and Hispanics in telephone blocks based on US Census data. To assess study participants’ donor designation status, we asked participants whether they had previously designated their donation intentions on a state drivers’ license or signed organ donor card. We defined non-designators as participants who reported that they had not yet designated their donation intentions on a state driver’s license or signed organ donor card. Because we sought to assess disclosure preferences among persons who had not yet disclosed their intentions, we limited our study analysis and assessment of preferences about disclosing intentions to donate organs to the subsample of participants categorized as non-designators. The Institutional Review Board at the Johns Hopkins Medical Institutions approved the study, and all participants gave their informed consent prior to their inclusion in the study.
The 20-minute telephone questionnaire was administered to participants in both English and Spanish and assessed non-designators’ sociodemographic characteristics and interest in deceased donation, their trust in the medical establishment, and their preferences regarding methods for donation intention disclosure. Questions regarding disclosure preferences and attitudes toward medical mistrust were administered in separate sections of the questionnaire (See Appendix).
We ascertained non-designators’ self-reported race/ethnicity using categorizations designated by the 2000 US Census (White, African American, Hispanic, and Other racial/ethnic minority). We also assessed participants’ age, gender, education completed, annual household income, marital status, employment status, health insurance status, and census region of residence. We assessed non-designators’ stated interest in deceased donation by asking them: “Would you consider donating your organs after death?” Possible answers could be “no,” “yes,” or “not sure.”
We considered non-designators’ mistrustful attitudes regarding the medical establishment to include: 1) their explicitly stated lack of trust in physicians or hospitals, and 2) their beliefs regarding the likelihood they would receive less than optimal health care if their organ donation preferences were known to health care professionals. We assessed non-designators’ lack of trust in hospitals or physicians by asking them their agreement with the statements, “I trust hospitals to put my medical needs above all other considerations,” and, “I trust physicians to put my medical needs above all other consideration.” Possible responses for each question included “completely agree, mostly agree, somewhat agree, agree a little, or not at all.” We considered persons to trust hospitals or physicians if they answered “completely agree” or “mostly agree” (trusting) versus “somewhat agree”, “agree a little”, “or not at all” (not trusting). We assessed non-designators’ beliefs regarding the likelihood they would receive less than optimal health care if their organ donation preferences were known by asking them their agreement with the statement, “I believe that when a person who is an organ donor becomes ill, doctors will try everything to save their life before removing their organs for donation.” Possible responses for this question included “completely agree, mostly agree, somewhat agree, agree a little, or not at all.” We considered people to agree with this statement if they answered “completely agree” or “mostly agree” (agree) versus “somewhat agree”, “agree a little”, “or not at all” (not agree).
We presented non-designators with a list of potential avenues through which they might consider disclosing their organ donation intentions and asked them, “Please tell me if you think any of the following things would make it easier for you to become an organ donor.” The list included people with whom they might have personal discussions about their intentions and public venues through which they might publicly register their intentions. Options for personal discussion of donation included discussions with: 1) family members, 2) a physician, and 3) a pastor, rabbi, or other religious representative. Options for avenues through which public registration might occur included registration via: 1) mail, telephone; or computer (offered as one set of options), 2) a workplace 3) a place of religious worship, and 4) a grocery store, bank, or post office (offered as one set of options). Participants were asked to indicate their preferences for disclosing their intentions via these avenues by indicating an answer of “yes” versus “no” for each potential avenue listed.
We described non-designators’ demographic characteristics, attitudes of medical mistrust, and preferences regarding avenues through which they might disclose their donation intentions. We assessed differences in non-designators’ characteristics and attitudes according to their race/ethnicity using the chi-square statistics. In multivariable logistic regression models, we assessed the independent association of race/ethnicity with participants’ preferences for personal and non-personal disclosure methods, while controlling for age, gender, annual household income, insurance status, and US census region. In additional multivariable models stratified by race/ethnicity, we assessed differences in preferences for disclosure methods according to non-designators’ presence or absence of medical mistrust. We converted adjusted odds ratios from multivariable logistic regression models to adjusted percentages. We considered two-sided p-values of less than 0.05 to be statistically significant. All analyses were performed using STATA version 10.0 for Windows.
Prior to oversampling, we contacted a total of 847 households who agreed to randomization of participants within the household, and 720 respondents from these households agreed to participate in the study (representing 85% of contacted households). This initial sample consisted of only 44 African Americans and 63 Hispanics. Before oversampling occurred, the total study population consisted of 36.3% non-designators (77.5% White; 5.9% African American, 8.8% Hispanic). We then identified an additional 125 racial/ethnic minorities (58 African Americans and 67 Hispanics) through oversampling, resulting in 845 total completed telephone interviews. Among those participants oversampled, 75.4% were non-designators (47.4% African American, 51.6% Hispanic). In the final combined data, a total of 538 (63.6%) participants reported that they had already designated their donation intentions on a state driver’s license or signed organ donor card, and a total of 307 (36.3%) participants reported they had not previously declared their donation intentions. We limited our study analysis to this final sample of 307 non-designators.
A majority of non-designators were younger than 60 years of age, female, had annual household incomes less than $60,000 US dollars, had less than 2 years college education, were married or living with a partner and reported having health insurance (Table 1). Additionally, a majority of non-designators reported that they were interested (58%) or possibly interested (19%) in donating their organs after death. Compared to White non-designators, African American and Hispanic non-designators were statistically significantly more likely to be female, more likely to have incomes below $60,000 US dollars, and younger than 60 years of age. Whites were more likely to have health insurance than African Americans and Hispanics. Compared to Whites, African Americans and Hispanics non-designators in our study were also statistically significantly more likely to live in the Southern and Western US Census regions.
Non-designators’ medical mistrust varied according to their race and ethnicity. African Americans and Hispanics were statistically significantly less likely than Whites to completely or mostly trust their physicians to put their medical needs above all other considerations (Table 2). Less than half of non-designators among all racial/ethnic groups reported that they mostly or completely trust hospitals to put their medical needs above all other considerations. African Americans were also statistically significantly less likely than Hispanics and Whites to completely or mostly believe that when a person who is an organ donor becomes sick, doctors will try everything to save his or her life before removing organs.
Overall, a significant majority of non-designators reported personal disclosure of organ donation intentions with physicians (65%) and family (63%) would make it easier for them to disclose their intentions (Table 3). Significantly fewer non-designators reported they preferred disclosure of intentions with a pastor, rabbi, or other religious representative (38%). Among public forms of disclosure, a majority of non-designators reported registration via mail, phone, or computer-based registration (58%) would make disclosure easier, while fewer than half preferred workplace registration (40%), registration at a place of religious worship (36%), or registration at a store, bank, or post office (33%).
In multivariable models adjusting for sociodemographic factors, African Americans were statistically significantly more likely than Whites to prefer discussion with a pastor, rabbi, or other religious representative. In contrast, African Americans and Hispanics were statistically significantly less likely than Whites to favor workplace registration. African Americans were also statistically significantly less likely than Whites to favor registration through mail, phone, or computer-based methods. Hispanics were statistically significantly less likely than Whites to favor registration at a place of religious worship, after adjusting for sociodemographic factors.
In analyses stratified by race/ethnicity, attitudes of medical mistrust were often associated with disclosure preferences, especially among racial/ethnic minorities. Mistrust of physicians was associated with less willingness to disclose via personal discussion with family members (among African Americans), physicians (among African Americans and Hispanics), religious representatives (among African Americans) or via public registration via mail, telephone or computer (among Hispanics), public registration at a workplace (among African Americans and Hispanics), and public registration at a bank, post office or store (among Hispanics) (Table 4). Mistrust of hospitals was associated with less willingness to disclose via personal discussion with family members (among African Americans), physicians (among Whites and African Americans) or via public registration via mail, telephone or computer (among Hispanics). Concern about receiving less than optimal medical care with disclosure was associated with less willingness to disclose via personal discussion with family members (among African Americans and Hispanics), physicians (among African Americans), religious representatives (among African Americans) or via public registration via mail, telephone computer (among Hispanics), at a workplace (among Whites) at a place of religious worship (among African Americans). In some cases, mistrust in hospitals was associated with greater willingness to disclose with family members (among Hispanics) or religious representatives (among Whites and Hispanics).
In this national study of US-based adults, a majority of persons who had not previously designated their organ donation intentions on a driver’s license or organ donor card expressed interest in donating their organs after death. Most non-designators reported they more readily preferred to disclose their donation intentions through personal discussions, with greatest preference for discussions with family members and physicians. African Americans were statistically significantly more likely than Whites to prefer disclosure via personal discussions with religious representatives, and both African Americans and Hispanics were less likely than Whites to prefer public registration via mail, phone or computer, at workplace, or at a place of religious worship. Attitudes of medical mistrust were associated with potential donors’ lower preference for various methods of disclosure, especially among racial/ethnic minorities.
To our knowledge, this is the first US-based study with a national sample to assess racial/ethnic variation in preferences for disclosure of organ donation intentions among non-designators and to explore the influence of medical mistrust on preferences. In prior regional studies of disclosure preferences among racial/ethnic minorities, potential donors also demonstrated favorable attitudes toward personal discussion as a means for disclosing organ donation intentions. However these studies did not focus exclusively on non-designators and may have been influenced by strong opinions expressed by potential donors who had already disclosed their intentions through conventional methods [10–12]. Our findings extend those of prior work by providing public organ donation programs seeking to increase disclosure rates guidance regarding disclosure methods deemed most acceptable to non-designators as well as factors that may be important to address when working to improve disclosure rates among racial/ethnic minorities.
To date, a majority of efforts to enhance disclosure of donation intentions have focused on improving public forms of disclosure, including disclosure on drivers’ licenses and donor cards . Recent programs have devoted significant resources to making public disclosure more convenient (e.g. through registration on the internet) . Our findings suggest that programs emphasizing personal discussion as a means to facilitate disclosure may be better received by non-designators (especially racial/ethnic minorities with medical mistrust) than programs encouraging disclosure via public registration. Our findings of multiple strong associations between potential donors’ medical mistrust and their willingness to disclose preferences in a variety of hypothetical settings emphasize the importance of programs’ consideration of ways to directly address potential donors’ medical mistrust during program implementation.
Encouragement of personal discussion of organ donation intentions could have several benefits. Potential donor-physician discussions about the need for organ donation may improve potential donors’ knowledge about donation procedures and the transplant recipient selection process. Lack of transparency regarding the donation and transplant process has been previously identified as a factor associated with less willingness to donate among the general public (with an even greater impact among racial/ethnic minorities) and may also influence their willingness to disclose donation preferences . Explicit discussions with physicians and other health care providers about how decisions to proceed with donation are approached by health care providers, and about the donation and allocation process could help allay potential donors’ mistrust of the donation process, including their concerns about receiving inadequate health care if their donation intentions are known. Regional variation in methods for determining cerebral death in the US likely enhances potential donors’ confusion and subsequent mistrust about this aspect of donation . Thus, health care providers’ efforts to explain cerebral death and to clarify differences in regional procedures could also help address donors’ mistrust. Our finding suggests efforts to directly address medical mistrust within the context of potential donor-physician discussions could be especially important for racial/ethnic minorities, for whom willingness to disclose was more consistently associated with disclosure preferences. Potential donor-family discussions about donation intentions may help potential donors solidify their desires to declare donation. As a result of discussions, family members may also be more receptive to learning about donation when faced with donation decisions and more likely to provide consent for donation. Previous research has demonstrated targeted educational interventions to improve knowledge about the donation process among families prior to organ donation requests may result in increased rates of family consent and deceased donation . Discussions between potential donors and religious representatives may provide a venue through which well-documented concerns, particularly among racial/ethnic minorities, about donation and its potential impact on spiritual well-being after death associated with donation can be addressed and demystified [5–6, 17]. Because OPOs play such prominent role in hosting electronic donor registries, their provision of education to potential donors could significantly help to increase the perceived transparency of the donation and allocation process and potentially influence potential donors’ mistrust. The value and feasibility of targeted outreach efforts by OPO professionals to identify potential donors and discuss donation and allocation on an in-person basis warrants greater exploration.
Limitations of our study deserve mention. First, we performed a 20-minute interview in which we attempted to ascertain some sensitive personal information (such as socioeconomic status) from participants in addition to their attitudes about disclosing their organ donation intentions. It is possible those willing to respond to a lengthy questionnaire with this type of content are systematically different from persons not willing to participate in the study. In addition, participant attitudes assessed at one point in time may not predict future behaviors. Second, our limited sample of non-designators may have more favorable attitudes toward organ donation than non-participating non-designators. Our study population was diverse in age, gender, income and education, potentially limiting the generalizability of our findings. We also oversampled African Americans and Hispanics and divided our population into smaller subgroups, which could have influenced study results. Further, we did not oversample from other racial/ethnic minority groups known to have disparate rates of organ donation, such as Asian immigrants. Nonetheless, we did draw oversampled minorities from all regions of the U.S. Third, although we assessed non-designators’ preferences regarding a variety of personal and public avenues for disclosure, we grouped some forms of public disclosure (e.g. presenting bank, post office, or store registration as one category), limiting our ability to determine whether specific subtypes of disclosure might be most preferable within groups. Further, we did not assess non-designators’ specific reasons for preferring certain specific disclosure methods or optimal mechanisms for implementing certain types of disclosure. For example, there might be multiple venues and mechanisms by which computer-based registries could be operationalized (e.g. online registries accessed at home versus computer-based registration at a state department of motor vehicles location. Findings among some subgroups of participants of a positive association between medical mistrust and participants’ greater willingness to disclose preferences (for instance, greater willingness to discuss donation intentions with religious representatives among Whites and Hispanics with medical mistrust) warrant further investigation. Some subgroups were small, which could have contributed to variability in estimation of attitudes.
In conclusion, a majority of US non-designators reported they more readily preferred to disclose their donation intentions through personal discussions, with greatest preference for discussions with family members and physicians. Compared to their White counterparts, racial/ethnic minorities were more likely to prefer personal disclosure with a religious representative and less likely to prefer public registration. Attitudes of medical mistrust were associated with non-designators’ lower preference for various methods of disclosure, especially among racial/ethnic minorities. Programs seeking to improve non-designators’ disclosure rates may consider encouraging personal forms of disclosure and emphasize the importance of addressing medical mistrust during disclosure opportunities. Further research is needed to elucidate the reasons for non-designators’ preferences and to further elucidate why the influence of medical mistrust on disclosure preferences may differ among racial/ethnic groups.
Funding Sources: Ms. Purnell was supported by grant 1F31DK08480 from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH), Bethesda, MD. Dr. Powe was supported by grant K24DK02643 from the NIDDK of the NIH, Bethesda, MD. Dr. Wang was supported by grant UL1RR025005 from the National Center for Research Resources (NCRR) of the NIH and the NIH Roadmap for Medical Research, Bethesda, MD. Dr. LaVeist was supported by grant P60MD000214 from the National Center on Minority Health and Health Disparities of the NIH, Bethesda, MD. Dr. Boulware was supported by the Robert Wood Johnson Harold Amos Faculty Development Program and by grant K23DK070757 from the NIDDK of the NIH, Bethesda, MD. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official view of NIH or NCRR.
Disclosure: There are no affiliations or financial involvement with any organization or entity with a direct financial interest in the subject matter or materials discussed in the manuscript. The authors have no financial or nonfinancial conflict to disclose.
Authorship: TSP and LEB were responsible for defining the goals of the manuscript and for writing the manuscript. TSP, NRP, NYW, TAL and LEB were responsible for data analysis and interpretation of the results. LEB, NRP, MUT, and NYW were responsible for developing the survey design, data collection, and data management. NRP, NYW, TAL, and LEB acted as advisors and contributed to synthesizing the discussion and conclusions.