Part VIII: Recommendations
VIII. RECOMMENDATIONS
A. Lessons Learned
B. Recommendations for the Future
VIII. RECOMMENDATIONS
The purpose of this section is to go behind the pure numbers presented in the evaluation section and combine the statistics with the on-site observations of the Advisory Committee, trainers, regional coordinators and project management.
In this section we have looked back to capture what we learned and looked forward toward potential expansion and improvement of the products developed by the Clergy End-of-Life Education Project. We share some the lessons learned during the course of the project and suggest things that worked well and those that we would do differently in the future. With the help of the Advisory Committee, we have taken a look forward and developed recommendation for future endeavors to educate the faith communities of Florida.
The project managers learned many valuable lessons in the course of planning, designing and implementing this ambitious statewide project over a relatively short period. While the evaluation clearly indicates a high level of success, future clergy education programs can achieve even greater results. Attempts to educate clergy in end-of-life issues should build upon the recommendations which grow out of our experience. The best way to optimize results is to conduct a candid assessment of the lessons learned.
Curriculum.
The curriculum received high scores for comprehensiveness by participants. When asked what else they would like to have included, they responded "more of the same." The project created a curriculum that was relevant to the needs of the clergy. We would not omit any part of the curriculum. There are parts that would benefit from further development, as outlined below, but the concepts of the program have proven their worth and relevance to the target audience.
Cultural Issues. The issues of cultural and ethnic differences are of key importance. The beliefs of particular cultures inform attitudes throughout the range of end-of-life decisions, from the point of advance care planning through the dying process, death rituals, and the time of grieving. The issues are as diverse as the cultural and ethnic mix of the population in any given area. In a program of this scope and duration, it would not have been possible to provide answers to all the questions that participants will have about cultural differences, nor to present all the cultural facets of an issue. It is, however, important to provide resources and direction so that local faith communities are prepared to serve their members in culturally appropriate ways. In several presentations the lack of cultural relevance was noted, and in other sessions the presenters felt it was just below the surface. Because the cultural mix is specific to a given locality, this component of a clergy education program must be designed in concert with members of the cultural and ethnic groups living in the area. Extra time must be allowed to cover the topic. The literature on the subject is increasing and can be added to the resource materials for the program.
Self Care. The project staff was surprised by the strong positive response to the inclusion of self care as a module. Many participants noted that it was the first time anyone had paid attention to it and they were pleased to learn that they were not alone in their stress. It clearly struck a cord with clergy members present at the sessions and should be developed more fully as a key component for any future programming.
Spiritual Issues. The experience of the field training staff indicated a high level of tolerance and respect for the religious beliefs of other participants at the session. In the course of the development of the program, the staff may have approached this topic with some reservation for fear that controversy might arise during the presentation. The topic of spiritual issues at the end of life is receiving increased recognition by end-of-life service providers and one to which members of the clergy have an important contribution to make. We would do well to empower and embolden clergy participants to explore their own and their constituent's spiritual issues around death and dying in order to serve them better.
Resource Materials. The plan to include take-home materials for further study and distribution within the participants' faith communities was an excellent one. Participants left the sessions with a broad array of resources to draw upon. Their appreciation and gratitude was much in evidence. Any future programming would include the same level of resources, subject only to inclusion of updated materials as they become available.
Program Length. Lengthening the workshop to cover more of the material, suggested by some participants (18%), may provide a richer experience and would permit the inclusion of additional modules suggested by the Advisory Committee. However, the one day session resulted in a 70% increase in knowledge and lengthening the session may preclude some clergy from being able to attend and receive the "full value" of the program. Moreover, the cost of lengthening the session into a day and a half or two day conference would significantly increase the cost of producing the program.
Didactic vs. Participatory Approaches. Greater audience participation and the use of illustrations/stories was a repeated suggestion for improvement. This was suggested by participants at the pilot test and later sessions as well as by the program's creators and the Advisory Committee. Some of the project team leaders felt a strong need to convey the curriculum and relevant materials in a structured manner. This, coupled with the abbreviated time frame, led to the decision to emphasize a didactic approach. Several regions amended their programs to permit greater interaction and felt that this enhanced the overall program's efficacy. One option for future local replication of the program might be to conduct the program through a series of discussion sessions led by featured presenters and trained facilitators. This series could be held over a longer period if more than one session is required, although the cost factor in this approach is again raised.
Project Management
Train-the Trainer Approach. From the beginning project managers were concerned about the uniformity of presentations in the various sessions. We found that participant response to the presentations reflected the skills, knowledge and sensitivity of the trainers. The project learned an important lesson from this experience. It had been a part of the work plan to present the curriculum statewide using a train-the-trainer approach. This was to take place as part of the Regional Coordinator's Workshop conducted at the point of statewide launching of the project. We quickly learned that we had not allocated sufficient time to this part of the day's schedule. When disseminating a similar program in the future emphasis must be placed on the selection of statewide trainer based on specific criteria. Once the trainers have been identified, adequate time must be devoted to familiarization with the content of the curriculum they are being asked to deliver. In addition, it is imperative that the trainers be equipped to convey the full intent of the program in a culturally sensitive manner.
Community Outreach and Program Implementation. The Health Council of South Florida devoted significant time and effort to the development of a marketing approach and accompanying materials that were distributed to the regional organizations charged with implementation. This aspect of the project was well designed and can serve as a template for future projects that use this dissemination model.
The Health Council of South Florida, as a sub-contractor, was responsible for guiding the outreach efforts and implementation process on a statewide basis. There are two specific skills sets needed to conduct effective community outreach and to manage the implementation of local education offerings: one is the ability to engage people, talk to groups, approach individuals to solicit support and the like; the other is good organizational, management and statistical skills. These are very different skills and are seldom embodied in one individual. It is important, therefore, to select local organizations that have staff members who can fulfill both functions.
The Clergy End-of-Life Education Project was conducted, from start to finish, within a one-year period. That fact precluded sufficient time to publicize and promote the program with enough advance notice. The local health councils did extraordinary work in compiling lists and contacts through which the sessions were made known. However, cooperation with statewide and regional religious councils and associations was hampered by the timeline. Future programs should find a way to start the promotion campaign well in advance of the event.
Project Evaluation
Cross Tabulation of Data. The Advisory Committee alerted project managers that collection of data from clergy might be difficult. However a lot of data was collected, and a more refined analysis of it could offer even greater insights. For example, did clergy respond to the questions differently than non-clergy participants? Were people of color more likely to express concerns over the cultural considerations module? How did the results differ by age, gender or faith community? These are but a few of the potential areas for further analysis. Such results would be invaluable in ascertaining the best methods for replication, further development, refinement and dissemination of this highly successful program.
B. Recommendations for the Future
The Advisory Committee convened at the conclusion of the project for a one-day session in which the project was reviewed, the evaluation results were presented and recommendations brainstormed for future efforts to improve and disseminate the program. The following suggestions were offered:
1. While participation by members of the clergy was significant, the program also attracted lay members of faith communities who assist in pastoral care tasks. Participation included large congregations as well as small, rural as well as urban. The Committee recommended that future efforts focus on the composition of the audience and gear the program accordingly to include the learning needs of both clergy and lay leadership. In planning future meetings, consideration should be given to setting aside some part of a day's activities for clergy members to meet in a separate session to allow for discussion that might be suppressed in a mixed clergy/lay group.
2. Clergy are clearly interested in increasing their knowledge. One suggestion brought forth was the possibility of developing the curriculum into a certificate program in conjunction with an accredited university or end-of-life center. Such a program would be especially efficacious as a distance learning offering.
3. It was suggested that a clergy education program be offered to local hospitals as a means of adding credibility to the program. This would reinforce the notion within the medical community that clergy are an essential part of the hospital care team.
4. The Committee members noted that the program attracted a preponderance of older people and that it is important to bring end-of-life knowledge to clergy members at the outset of their ministries. It was suggested that conveners of end-of-life curriculum such as HFA partner with seminaries and/or institutions of higher learning that prepare faith leaders at the Masters and post-graduate level in order to reach a young audience and influence their careers from the beginning.
5. In addition to the partnerships mentioned above, the Committee recommended building natural relationships with other organizations that share common concerns such as AIDS organizations. They recommended that relationships with hospice and palliative care groups, particularly the Partnership for Caring, be continued and reinforced. Through their local contacts, these organizations possess a unique networking capability that is invaluable in outreach and marketing efforts. Their influences may not be readily seen or measured, but they will be clearly felt. A partnership with the Area Agencies on Aging is a natural collaboration that should be pursued.
6. In keeping with the project management's recognition that a strong train-the-trainer effort must be included, the Committee recommended that a minimum of a full day and a half session be required for anyone who agrees to be a trainer at any local session throughout the state. The training would be devoted exclusively to familiarization with the materials, practice presentations and reinforcement of presentation skills.
7. Future advisory committees could include representatives from a seminary, a chaplaincy organization, someone who could represent issues relevant to Hispanic groups, area agencies on aging, and other organizations that interface with faith communities.
8. With respect to the curriculum, the Committee had a number of recommendations:
- Given the large and growing Spanish-speaking population throughout the State of Florida, the program should be translated into Spanish. At a minimum, the consumer materials, handouts and PowerPoint presentation should be available in Spanish.
- They urged HFA to convert as much of the curriculum as possible to the EPEC (Education for Physicians in End-of-Life Care) model as much as possible. The EPEC materials are available for anyone to use and are applicable to a non-physician audience as well. Some topics, essential to this audience, are not included in the EPEC program such as self care, spiritual care, cultural issues, and the grief process. These are modules that would benefit from further refinement. The project was urged to standardize the curriculum and create PowerPoint presentations that would guide program content and permit standardized training.
- The development of qualification criteria for those who will be conducting the local education sessions should be a priority. (The material is only as good as the person presenting it.) There are a significant number of certified EPEC trainers throughout the state who could be called upon as qualified trainers to present portions of the program. In addition, ELNEC (End-of-Life Nursing Education Consortium) now has a cadre of nurse educators who could form part of an expert trainer team throughout the state. Hospice staff continue to be another valuable source of trainers with in-depth knowledge..
- The Committee grappled with the complexity of how to appropriately incorporate the cultural component into the curriculum materials. The recommendation was to incorporate local input and expertise to address issues distinctive to their ethnic or cultural group. Discussion questions that will increase participants' awareness and sensitivity about historical beliefs, taboos, rituals, and customs could be developed.
- Due to the high incidence of grief involving children, it was recommended that a module on children's grief be included. This would cover instances of children with terminal illnesses or diseases and children experiencing significant loss.
- In addition to the topic areas included in the curriculum, the Committee recommended the inclusion of a module, or the incorporation throughout the modules, of material that addresses ethical issues at the end of life. Such
topics as self-determination, autonomy and informed consent are appropriate issues for discussion in clergy education in end-of-life issues.
