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

Hospital-Based Interventions

• Communication with Potential Donor Family Members
• End-of-Life Care Issues
• System-wide Hospital Interventions

There are several types of interventions that targeted systems centered in hospital settings. The first involved training transplant coordinators (also called requestors) to be more effective in their approach of potential donor family members. The second involved training transplant coordinators and/or other hospital staff involved with transplantation on end-of-life care issues. A third type of intervention attempted to change hospital procedures or organizational culture as a way to reduce internal barriers to organ donation (such as a reluctance to refer potential donors to the OPO because of the extra work that donors represent to nursing staff). A fourth type of intervention examined the effect of having transplant coordinators work “in house” at hospitals, rather than being headquartered at OPOs.

Communication with Potential Donor Family Members

One of the most successful and ambitious interventions of the DOT grant program involves altering the manner in which transplant coordinators approach the families of potential donors. The “presumptivity” approach²¹ posits that by changing the way organ donation is framed to family members and by more or less scripting the interaction with language that presumes that families will consent to donation when given the opportunity, consent rates will increase. The first year of the project was devoted to carefully crafting the training curriculum, using feedback from a diverse advisory board consisting of project staff (which includes bioethicists), a psychologist, a communication consultant, donor family members and a transplant coordinator. After gathering feedback on the evolving curriculum, OPO training sessions were scheduled. Coordinators at four OPOs (serving a total of seven states and 480 hospitals) were trained in the presumptive approach in full-day sessions that consisted of lectures and a number of role-plays.

One notable feature of the presumptivity approach is that rather than emphasizing the surgical procedure that donors undergo as part of organ procurement, transplant coordinators are instructed to talk about the heroic ability of donors to save lives and of the continuing living legacy that donors have. The improvements associated with the presumptivity approach were quite dramatic. Consent rates increased 10% or more, frequently exceeding a total consent rate of 70%. The positive effect of the training was seen across ages, ethnicities, educational levels, and religions. Especially positive effects were noted when requestors were ethnically similar to potential donor family members: nearly 80% when ethnically similar requestors used the presumptivity approach, versus 54.2% with dissimilar requestors using the standard approach. Such a dramatic set of results cannot be ignored. Indeed, the investigators report that they have been deluged with requests for their training program from a number of OPOs.

A similar program was designed by a consortium led by the South-eastern Organ Procurement Foundation in Virginia²², except that efforts focused on testing the effects of training transplant coordinators on end-of-life issues and personal stress reduction in 15 OPOs (8 in the intervention group and 7 in the control group). The “Passages to Change” project included four training sessions spread over the 2-year project period; each lasted 1 ½ days and included 20-25 coordinators. Training sessions used lectures, role-plays, discussions, experiential activities and multi-media presentations. By raising awareness of requestors that family members progress through a series of stages in their donation decision-making process, it was hoped that consent rates would rise. Before the intervention, consent rates in both the intervention and control groups hovered near the 50% mark. In years 2 and 3 of the project, the intervention group’s consent rate rose to 56% and 55%, respectively, while the control group’s consent rate was 51% and 49% over the same two years, indicating that the intervention resulted in approximately a 5% advantage. This represents a significant increase in the number of donors and the number of organs available for transplant.

A slightly different, innovative approach in Albany²³ incorporated volunteer donor mothers as part of the OPO team that approached potential donor families. Rather than trying to actively persuade families to donate, the MOD Squad, consisting of volunteer donor mothers who undergo psychological screening prior to their participation in the project, act as family advocates and provide both material and emotional support to the bereaved families. However, these donor moms do relate their own experiences with organ donation and provide important information about brain death and the donation process as well as the benefits associated with organ donation. This intervention was conducted at three OPOs and was evaluated not only by comparing consent rates but through the use of qualitative interviews of donor and non-donor families who did/did not receive the MOD Squad intervention. The intervention was associated with perceptions of a more positive hospital experience, with particular gratitude being expressed for the emotional and psychological support provided by MOD Squad volunteers. Additionally, intervention group members were more likely to report that they had been given sufficient time and information needed to make an informed decision about donation. Actual consent rates support the conclusions of the qualitative studies: the consent rate in the intervention group rose to 72.6%, while the consent rate in the control group was 58.3%. Project statisticians controlled for the age of the potential donor (because parents of young children are more likely to consent to donation), which did reduce the advantage of the intervention group to 5.1% (a difference that was still statistically significant). Again, this is clearly an intervention that has the potential to save a rather large number of lives if it were to be replicated nationally.

A less successful program in Virginia²⁴ centered on developing a “family communication coordinator” protocol that utilized hospital chaplains as the center of a team designed to serve potential family members. One key objective was to reduce the burden on hospital staff in the hopes that this would increase the number of referrals of eligible donors to the OPO. Indeed, the number of referrals did increase, which is a fundamental first step toward increasing the number of organs available for transplant. However, actual consent rates for donation decreased over the project years (from a baseline of 67% to project year rates of 43%, 42%, and 48%). There was, however, a significant reduction of role stress among hospital nurses, which is likely the reason for the increase in referrals of potential donors. The reasons for the drop in consent rates need to be carefully examined. Unfortunately, the project team concludes that there is no advantage for ethnic matching with potential family members, an unwarranted and potentially harmful conclusion for two reasons: 1. this strategy has been consistently associated with success among other OPOs; 2. the intervention described here uses hospital chaplains who provide spiritual counsel to potential donor families, not actual requestors. The credibility afforded to spiritual leaders may well transcend issues of race and ethnicity, compared to the assumed vested interest that transplant coordinators have when speaking to potential donor family members.

Another project that sought to reduce the occupational stress of organ procurement coordinators was conducted in New York²⁵. Coordinators could attend five sessions focusing on stress management, peer support, research findings on effective strategies for increasing donation, cultural competence, and ethics. Unfortunately, the coordinators participating in the program did not rate the curriculum very favorably, which is likely one reason that consent rates did not increase. A second reason centers on the fact that requestors were expected to translate their learning into changed approaches to the request process, rather than explicitly demonstrating through the program how the concepts could apply. It is probably no coincidence that this is the central strength of the presumptivity approach.

In summary, it is notable that interventions that do not involve specific skill training for transplant coordinators (with a well-received curriculum) did not result in appreciable change in consent rates. On the other hand, successful interventions in this category of projects generally increased consent rates through improved communication with donor families, whether through specially-trained transplant coordinators or through screened and trained volunteers who were themselves donor mothers. Increasing coordinators’ knowledge of the donation decision-making process that family members undergo also appeared to result in improved consent rates.

End-of-Life Care Issues

Interventions that focused on improving end-of-life care focused on health care providers as well as organ procurement coordinators. Enhancing end-of-life care included providing psychological support to family members, enhanced ability to explain brain death, cultural sensitivity, and general communication skills; the specific skill sets focused on varied by project.

Johns Hopkins²⁶ developed an experiential training program for ICU physicians, nurses, chaplains, social workers, and transplant coordinators, and encouraged them to work as interdisciplinary teams. Training sessions were spread over six months and included three ½-day sessions. These sessions included a variety of topics including cultural sensitivity, legal and ethical issues, shared decision-making, communication skills, and shared decision-making. The intervention utilized standardized patients so that participants could role-play and practice new communication skills. The project team reported some difficulties in persuading health care providers to operate as a team, and some types of health professionals (e.g. physicians) reported more difficulty in dealing with families on an emotional level. Impressively, consent rates rose in intervention hospitals from a baseline of 30-35% to 43.2%, which equated to an increase of 9 extra donors (approximately 27 additional transplants) over just two years of the project; the results of the training program can be expected to endure beyond the project period, however, so increased donation rates are likely to be maintained.

A state-wide project in Georgia²⁷ similarly sought to develop a team-building approach across 15 hospitals in 7 cities. Hospital and OPO staff participated in the program; on average, 44 people from 14 hospitals participated in monthly sessions to discuss a variety of issues related to barriers to increasing organ donation. Not surprisingly, the project did increase levels of satisfaction and comfort between staff members of OPOs and hospitals. Although there were no significant changes in attitudes and knowledge about organ donation, knowledge of end-of-life issues did increase significantly pre- to post-test among intervention group members. More importantly, although both the intervention and control groups experienced increased donation rates, the rate of increase was significantly greater among intervention group hospitals than controls.

Another project that enhanced end-of-life care for potential organ donors and their families was developed by the New England Organ Bank²⁸. The project first assembled an Organ Donation Advisory Committee and a Family Support Team for each of the three participating hospitals (17 other hospitals served as controls). The members of the Family Support Teams attended one-day training sessions on communication and psychological support skills, as well as how to coordinate care for families. Team members also learned how to convey bad news and explain brain death. Over 18 months of the intervention period, referrals increased at a greater rate in the intervention group (18% vs. 7%), which approached statistical significance (p = .07). Unfortunately, consent rates did not increase. However, it should be noted that the training sessions did not directly address how to increase donation rates, but rather focused on factors that were thought to indirectly impact donation rates through increased satisfaction among patient families. The intervention did increase perceptions of emotional support, increased communication skills, professional gratification, and OPO-hospital collaboration.

End-of-Life Care interventions for hospital staff and transplant coordinators varied in their capacity to improve consent rates. The most significant factor that seems to associated with successful projects is the explicit focus on translating the knowledge gained through the intervention into specific applications for actually improving rates of organ donation.

System-Wide Hospital-Based Interventions

Two projects attempted to implement a systemic approach to increasing referral and consent rates in hospital settings. As seen in a number of projects reviewed earlier in this report, OPOs are only one part of an entire system that impacts families’ willingness to donate, including transplant coordinators (who may be bases in either OPOs or hospitals or both), funeral directors, and hospitals (particularly doctors and nurses who interact with trauma patients). Treating a hospital as an entire system which must be changed in order to improve transplant outcomes is certainly an ambitious endeavor which requires a great deal of commitment on the part of participating hospitals, as well as the project team that attempts to implement such a change.

Certainly one of the most successful interventions of the DOT grant program to date was a four-state, eight-hospital replication of a program that had previously increased donation substantially in two Houston hospitals²⁹. The project team posited that housing transplant coordinators within hospitals would improve efficiency in hospitals’ donor referral processes, reduce stress on doctors and nurses by freeing up time that could be spent treating other patients (rather than counseling bereaved family members or explaining brain death), and provide better sources of timely organ donation information to potential donor family members at a critical moment in the decision-making process. Transplant coordinators were recruited and trained, then continuously monitored by the project team. The intervention was an unqualified success. In detailed statistical analyses, comparisons were made not only pre- to post-test, but among hospitals in the same OPO region as well as nationally. Nationally, intervention hospitals had 35% more minority referrals and 7% higher consent rates across all ethnic groups (60% vs. 53%) and a 9% greater consent rate among minorities (51% vs. 42%). The same general pattern of results was found when analyses were performed by city and region.

Interestingly, quantitative surveys of nurses at hospitals seem to indicate that at hospitals with in-house coordinators, nurses develop more favorable attitudes and greater knowledge about organ donation than at hospitals without in-house coordinators. (More detailed statistical analyses are needed on these findings.) Speaking to the systemic effect that in-house coordinators have, the project final report states, “…the presence of an [in-house coordinator]…may also have an indirect effect on favorable donation outcomes by providing nurses in that hospital with more donation information as well as by enhancing appreciation of the work that OPOs do in helping hospital staff and families.” The project team does caution that organizational adjustments need to be made, particularly by OPOs, to accommodate in-house coordinators’ needs if this system is to be replicated. However, because of the high number of lives that can be saved through increased numbers of transplants by making this system-wide adjustment, OPOs and hospitals should certainly consider implementing this type of adjustment.

Another project in Wisconsin³⁰ sought to increase rates of organ donation by understanding, then improving, levels of knowledge about DCD (Donation after Cardiac Death) among transplant coordinators as well as hospital staff, including physicians. After extensive formative research (including interviews with nurses, physicians, administrators, clergy, social service staff and donor families), and aided by an external Advisory Board, the project team developed a brochure that explained DCD in ways that targeted key areas of concern among people potentially involved with organ transplantation. Internal support for developing a protocol for DCD was gained rather quickly throughout the Wisconsin OPO’s many service area hospitals. As a result, the project doubled the number of hospitals with DCD protocols, from 8 to 16, with another 8 on the verge of adopting a DCD protocol at the time the final report was being written. This lead to an increased number of donors, from 12 DCD donations in the year prior to the project to 27 DCD donations during the final year of the project (an increase of 125%). It is unfortunate that another matched OPO system was not used as an experimental control to test whether DCD donations were increasing even in the absence of the intervention and whether the rate of increase of DCD donations was statistically greater among intervention hospitals. Nonetheless, this can be considered a successful intervention.

A different model for the development of new protocol to increase donation in hospitals was developed in Mississippi³¹. The project team took an established procedure, the Clinical Practice Analysis (CPA), which had been used to evaluate group and individual performance of physicians on a number of other types of diagnoses, and applied it to organ donation. In regular section meetings facilitated by a “physician champion,” both group and individual performance data were presented regarding organ donation referral, consent, and conversion. Focus groups at the beginning of the project identified perceived barriers to the organ donation process, the findings of which were translated into educational interventions and improved protocols within the hospital. As a result of the project, referral rates rose from 67% at baseline to 95% in 2005. The consent rate relative to the number of potential cases rose from 15% to 37% from baseline to project conclusion, although the absolute consent rate dipped dramatically (50% to 23%) at mid-project period, concluding with a rise to 47%. It should be noted, however, that the project did not target transplant coodinators with educational interventions or improved protocols. In fact, because the number of potential donors doubled from the first year to the second (and third) years, and doubled again by the final year, it is likely that transplant coodinators may have been overwhelmed by the increased activity over such a short period of time. Coping with the dramatic increase in the number of potential donors can only be addressed by the OPO; this does not speak to the success of the hospital staff intervention. In fact, this hospital-based program’s ability to improve referral rates extended beyond organ donation to include tissue donation, which rose from 90% to 100%, with consent rates rising from 6% to 10%.

[Note: The North Shore Jewish Health System project would fit into this category of interventions, but the printout of their PowerPoint slides provides insufficient information about their evaluation. However, because 3 of the 5 hospitals dropped out of the project, the data are likely to be quite weak.]

This category of interventions is arguably the most complex to manage and yet holds some of the greatest promise for increasing rates of referral as well as consent for organ donation. In-house coordinators are so remarkably successful that they should be considered a “best practice” in the area of organ procurement. While this type of intervention is not without its complications for implementation, the number of lives saved through increased rates of donation is surely an adequate payoff. Similarly, developing DCD protocols and then educating hospital staff on these protocols have been highly successful, warranting replication in other parts of the country.