Report on Social and Behavioral Interventions to Increase Organ Donation Grant Program 1999-2004

Professional Education

Because there are a number of professions that have potential impact on public attitudes toward organ donation, it is important for members of those professions to be knowledgeable about donation. Thus, some project teams elected to focus on professional education for medical professionals, lawyers, clergy, and funeral directors. Funeral directors in particular have a potentially powerful (negative) impact on families’ willingness to donate, although the exact number of cases where funeral directors have influenced families against donation has not yet been determined. Funeral directors’ own lack of knowledge about organ donation combined with the added burden (in both time and expense) of preparing a donor’s body for burial has undoubtedly both contributed to the problem.

Funeral directors have been targeted by two projects in New York. The National Kidney Foundation¹⁵ conducted a multi-phase intervention. The project began with formative research that revealed that funeral directors knew little about the organ donation process—and that organ procurement organizations knew little about the funeral process. This lead to the development of a “Best Practices” document that was then distributed to organ procurement organizations in Connecticut, Iowa, and North Carolina, who in turn distributed it to a large number of funeral directors. Comparisons of pre- and post-test internet surveys demonstrated improvements in OPOs’ perceptions of funeral directors support of clients’ decision to donate, which rose from 48% to 63%. One of the most surprising findings was that before the intervention, 29% of funeral directors did not believe that a normal open-casket funeral could be held for organ donors. After the intervention, only 13% reported this belief. Although the evaluation of the program is limited by low response rates, lack of a matched-sample, and the lack of inferential statistical tests of the data, it does appear that both the OPO community and funeral directors could benefit from mutual education about the nature of the others’ mission.

In Buffalo, funeral directors^16*

Because clergy also have powerful influence over parishioners’ decision-making about spiritual issues (particularly in the African American community), LifeGift3 developed a program designed in large part to educate the clergy of Black churches. Formative research led to the development of two sets of materials: a resource manual for clergy as well as a package on the Biblical perspective on organ donation for use in Sunday schools and churches. As a result of the intervention, the proportion of clergy responding that the issue of organ donation is important in the Black community rose to two-thirds. Unfortunately, the project did not translate into a greater willingness to donate organs among the parishioners of these clergy.

Lawyers who offer estate planning services are another potentially important outlet of organ donation information. Because clients are already in a mental state where they are confronting the eventuality of their own deaths, it was posited that they would be more receptive to organ donation information. The project team¹⁷ first educated lawyers in the Buffalo area through the use of in-service informational sessions as well as continuing legal education and provided lawyers with brochures to give to clients. As a result, the project did increase clients’ pre/post-test knowledge about organ donation by 73%, increased family discussions by 33% and increased the rate of signed donor cards or registries by 16%. However, preliminary reports have indicated that the primary barrier faced by the project has been convincing individual lawyers employed by the firms which granted access for the program to actually distribute the information. This is apparently due to the amount of billable time associated with speaking with clients about organ donation. It should be noted, however, that another key part of the project involved the development of a curriculum on organ donation for law schools in the area; however, because the project has a one-year extension, the evaluation of any results associated with the curriculum have yet to be reported.

There are also medical schools that have been receptive to curricula on organ donation. Medical students at University of Buffalo, after receiving a special unit on organ donation, had the opportunity to participate in community outreach in the African American and Hispanic communities. Their assistance with outreach produced the most effective of the three interventions to improve the willingness of the public to donate. This project² is reviewed in more detail in the “Community Outreach Campaigns” section.

Projects that have focused on professional education have met with mixed success thus far, at least as far as can be evaluated using social scientific methodology. While it is true that maintaining access to the population of interest is an important issue, it appears that evaluation efforts were sometimes compromised by low response rates and weak research methodologies. This certainly does not mean that professional education does not hold promise, but rather that stronger projects are needed to evaluate the potential impact of professional education projects on improving the rates of organ donation.