Part V: Program Development
V. PROGRAM DEVELOPMENT
A. Project Planning
B. Development of Project Materials
1. Outreach & Marketing Materials
2. Clergy Resource Materials
3. Consumer Materials
4. Curriculum Materials
V. PROGRAM DEVELOPMENT
The Clergy End-of-Life Education Project was funded by the Florida Legislature and administered through the Department of Elder Affairs for the contract period beginning July 1, 2002 through June 30, 2003. The Hospice Foundation of America (HFA) was designated as the lead agency. The original amount of money requested in the proposal submitted in November 2001 was $350,000 and had as a goal conducting educational workshops that would be within reach (a two-hour drive) of 90% of the clergy in the State of Florida. The final amount appropriated for the project was $262,500.
The principle impact of the cutback in the amount of funding for the project was the need to refocus the project's intention to reach most of the counties in the State. The project managers looked at the best way to reach as many members of the clergy as possible with the available funding. Guiding criteria listed below were developed:
- (1) Population density - where could the largest number of people be reached with a mix of urban and rural representation while well as maintaining ethnic diversity?
- (2) Because outreach and delivery of the program would be drawing on the expertise of hospice staff, the availability and likely cooperation of local hospice organizations was considered.
- (3) Priority was given to areas where there had been an expressed interest on the part of the local health councils for end-of-life training. In consideration of these factors, and in consultation with the Health Council of South Florida, as the subcontractor on the project, six health planning districts throughout the state were chosen, with consideration given to the local health councils in those areas that had a strong presence in the community and the capability to mobilize an outreach effort. The health planning districts and the counties served by them were:
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- Districts 1 and 2: Leon, Escambia, Bay
- Districts 5 and 6: Hillsborough, Pinellas
- District 7: Orange, Brevard, Seminole and Osceola
- District 8: Lee
- District 9: Palm Beach, Broward
- District 11: Miami-Dade, Broward
A detailed work plan was developed immediately following notification of the project's funding. The work plan proved valuable in the development of the contract with the Department of Elder Affairs, the agency providing contract management for the project. The identification of the deliverables defined in the contract steered the initial project planning efforts. Such matters as the evaluation instruments, drafts of outreach and marketing materials, project training sites, elements for inclusion in the educational curriculum and the formation of an Advisory Committee were completed during the first three months of the project.
Careful consideration was given to the composition and structure of the Advisory Committee. The project management sought out individuals who had special expertise both in end-of-life issues and who understood the needs of clergy members who served on the "front lines" in communities throughout the state. Selection of representatives from the major faiths and mainstream denominations was given priority consideration as was clergy representation from the African American community. No one, it was deemed, could provide better insight into the learning needs of the clergy than clergy members themselves. Wherever possible, management tried to combine criteria from several categories so as to increase representation while keeping the committee size manageable. That approach is illustrated by the participation of Carlos Sandoval, M.D., a psychiatrist, Director of the Courtelis Center at the University of Miami Hospitals and Clinics, an EPEC (Education for Physicians in End of Life Care) trainer and an ordained Episcopal priest. Seats on the Advisory Committee were also designated for representatives from educational institutions who could provide meaningful input regarding ethical and educational issues. Dr. Kenneth Doka, a nationally known expert and published author on the subject of grief and bereavement, a professor of gerontology, an ordained minister and Bereavement Consultant to Hospice Foundation of America, served on the committee and played a key role in designing, developing and presenting the curriculum, as well as facilitating the first Advisory Committee meeting.
At the first Advisory Committee meeting, held on October 17, 2002, the committee was provided with an overview of the project, including the role of the lead agency, the Hospice Foundation of America and the Health Council of South Florida, serving as the principle subcontractor for the project. The project's organization established the interrelationship of the Department of Elder Affairs, the Hospice Foundation of America, the Health Council of South Florida and the participation of the five other local health councils was presented. Plans for the development of professional materials and a toolkit were described and the highlights of the work plan were discussed.
The Advisory Committee, in keeping with its mandate to provide guidance regarding the development of the project's curriculum, devoted time during its first meeting to the development of learning objectives that would guide project management in what finally became the Clergy End-of-Life Education Project's Trainer's Manual and the corresponding Participant's Manual. The ensuing discussion at the meeting led to the formation of 23 curriculum learning objectives. Dr. Kenneth Doka led the group through a prioritization process that subsequently combined and merged the objectives down to a more workable 19. The committee came to an agreement on those that were applicable to (a) the educational sessions and the consumer toolkit; (b) to the toolkit only; and (c) those that should be addressed only as time permitted.
Apropos of the significant element of community engagement that was a part of this project, Mr. Michael Bell led a discussion on community engagement. Mr. Bell has extensive experience in community organizing and is Chair of the Partnership for Caring Coalitions in Florida. He outlined various resources that could be used to attract clergy to attend the educational workshops and strongly encouraged the groups to partner with other groups in the community, including:
- Community coalitions
- Summits or town hall meetings
- Faith in Action grantees and networks
- The Florida End-of-Life Coalition
- The Florida Partnership to Improve End-of-Life Care
- The media - by creating stories that involve following a family and its clergy member ministering to them through the dying process.
Mr. Bell recommended a strong presence from hospice at the community workshops, as well as hospitals, funeral homes, and the local Area Agency on Aging. He noted that marketing efforts could be advanced by collaborating with these groups.
The Advisory Committee discussed the appropriate length of the educational workshops and agreed that, in order to do the subject matter justice, a day long session was needed. Flexibility to break the curriculum into smaller segments to meet local needs was recommended. The committee agreed that the format should be less didactic and more participatory. It was suggested that advance care planning be an essential component of the program.
The Advisory Committee addressed the issue of sustainability and the next generation of the project. There was consensus that the toolkit must have all the component parts so that it could be replicated at the local level with minimum additional effort.
The project evaluation was addressed. Ms. Albury, the project evaluator, reviewed a set of draft evaluation questions. There were two types of research questions: one pertained to what the clergy learned as a result of the program and the other was what the project team learned from the clergy participants.
The Advisory Committee members suggested the following questions:
- Rate your knowledge of end-of-life care options (on a scale of 1 - 10)
- How would you rate the information you received/how much did you learn at the seminar? (on a scale of 1 - 10)
- Will you change your practice? Yes/No
- How did you hear about today's session?
- Would you like more information? If so, what information?
The process of contracting and securing the commitment of five local health councils was initiated and completed in the initial phase of the project's development. With assistance from the Health Council of South Florida, each local health council identified a regional coordinator who was responsible for the implementation of the workshops in his or her district. They, in turn were asked to identify sites where the workshops would be held and local trainers who would lead selected elements of the project's curriculum.
A training workshop was planned and scheduled prior to the date for implementation of the statewide workshops. All the regional coordinators were invited to attend along with identified trainers from their regions. The purpose of that meeting was to introduce the project materials and to launch the implementation phase of the project. A list of regional coordinators and trainers is included as Attachment B .
The Regional Coordinators in each target area identified and recruited two to three regional trainers. One of the trainers selected was required to be a local clergy person or a lay-leader, the second trainer was a member from the local health planning council, and the third, a hospice provider.
B. DEVELOPMENT OF PROJECT MATERIALS
In our challenge to attract clergy, we felt we could be successful if we developed a curriculum of high quality, provided intervention techniques, offered practical tools to help clergy perform their jobs and packaged it all into an easy-to-use format. These principles guided the development of all the project materials.
The development of materials was a collaborative effort. The Advisory Committee members were forthcoming with suggestions, ideas and contacts regarding marketing, consumer and educational materials. Their input was incorporated throughout the process of compiling and creating materials for the project.
1. Outreach and Marketing Materials
The outreach and marketing of the workshops to clergy members throughout the State was a primary responsibility of the Health Council of South Florida. The Hospice Foundation and the Health Council of South Florida worked together successfully on a prior project funded by the Legislature, the Hospice Medicaid Education Project. Project management was able to draw on the materials and expertise gained from that experience which, like this one, involved statewide dissemination through local organizations. In addition, HFA has extensive experience in conducting outreach efforts on a national level for its annual satellite teleconference, Living with Grief®. In a truly collaborative undertaking, the combined talent of the HFA national staff and the statewide network created by the Health Council of South Florida contributed to a model outreach and marketing package that was made available to all the local participating health councils.
The outreach and marketing materials included the following: (See Attachment C)
- Clergy End-of-Life Education Project marketing messages
- Statewide press release
- Regional press release
- Educational session flyer
- Project brochure
- Radio public service announcement (PSA)
- Questions and answers for interviews
The outreach and marketing packet of materials was presented to each of the participants at the Regional Coordinator's Training Workshop conducted in December 2002. A key feature of these materials was their adaptability to local markets by allowing for the inclusion of local information. Each of the regional coordinators had the ensuing four weeks to comment on the materials. At the request of the coordinators, a CD containing the outreach material files was created so local information could be inserted easily.
To ensure that a consistent and clear purpose for the sessions would be communicated, the project's marketing messages were defined and given to each regional coordinator for distribution to the many trainers and program assistants who made the sessions happen at the local level.
The distribution of the press releases statewide was accomplished by posting it on the HFA and council websites as well as the website of the Department of Elder Affairs. In addition, HFA e-mailed or sent the press release to local newspapers with general circulation. Regional press releases were sent to local newspapers by the regional coordinators. HFA also released information on the clergy sessions through its e-newsletter that has a distribution of over 8,500 nationwide.
The template for an educational session flyer, suitable for mailing and community posting, was designed. It was posted on the Health Council of South Florida website. At the regional level, the education flyer information was displayed on the local health councils' websites, on co-sponsors' websites and newsletters, in local newspapers and sent as an e-mail to clergy groups and associations, places of worship and hospices.
A direct mail brochure announcing the seminar was prepared and given to each region. It was camera ready for printing and allowed the region to insert its specific dates, locations and sponsor logos. Regional coordinators sent this out as a direct mail piece to clergy groups and association, places of worship, hospices and lay leadership groups.
At the local level, coordinators were encouraged to obtain radio spots on local stations, especially those that broadcast religious programs. They were encouraged to seek out interview opportunities and were given a question and answer template to guide interviews with the media.
Each region did a mailing of the project marketing brochure and/or flyer to their respective target communities. Over 5,000 outreach brochures were mailed to promote the educational sessions throughout the participating regions. The South Florida region also conducted an initial mailing of more than 200 outreach brochures in south Miami-Dade County for the pilot test of the project.
One of the keys to the success of the Clergy End-of-Life Education Project was the dissemination of high quality supplemental information to clergy. This included materials that added to their knowledge base and enhanced the educational experience of the day.
The clergy resource materials consisted of complimentary copies of HFA's audio tape set Clergy to Clergy: Helping Clergy Minister to Families Confronting Illness, Death and Grief, and the books Caregiving and Loss and an additional book selection from the HFA Living with Grief® series.
The Clergy to Clergy tapes, published by Hospice Foundation of America, were edited by Rev. Kenneth Doka and moderated by Rev. Anita Bradshaw of Yale Divinity School, and
feature nationally known members of the clergy from different faiths addressing everyday issues surrounding bereavement and grief. The series includes a lecture and discussion on the following topics:
- Counseling Those with Life-Threatening Illness
- The Funeral Ritual, Empowering Healing
- When a Child Dies
- Facing Illness as a Family
- Complicated Mourning
- What is Grief?
One packet including the six tapes and the accompanying resource guide was given to each clergy member who attended the sessions. Additional copies of the tapes were made available at a 50% discount. Participants were directed to listen to the tapes at their convenience and reminded that one tape included the death of a child, since this was not included as part of the curriculum due to time constraints.
Over the years, the Hospice Foundation has published a series of books generated out of the participation of leading national end-of-life experts who have spoken at its Living with Griefâ satellite teleconferences. Each participant was given two books from the series. Everyone received Caregiving and Loss: Family Needs, Professional Responses (2001). In consultation with their co-sponsors, the regional coordinators were asked to choose one additional book, appropriate to its constituents, from the following list: (See Attachment D)
- Living with Grief: Loss in Later Life (2002)
- Living with Grief: After Sudden Loss (1996)
- Living with Grief: When Illness is Prolonged (1997)
- Living with Grief: Who We Are, How We Grieve (1998)
- Living with Grief: At Work, At School, At Worship (1999)
The total retail value of the audio tapes and the two books is between $61 and $70.
Throughout the project, management was mindful of the importance of maintaining flexibility and local relevance. To that end, a format was developed and the local health councils compiled a list of local end-of-life resources that were provided to the clergy participants at each of the sessions.
An important product of the project was the creation and dissemination of consumer oriented educational materials that clergy could give to the families to whom they minister. These materials would have to be user friendly and comprehensive in scope.
Project management conducted an extensive library and Internet search to ascertain what information was currently available that could be provided, reproduced and disseminated by the clergy in their faith communities. The search, conducted by the staff of the Health Council of South Florida, yielded a vast amount of material. Project management reviewed what was available and made the determination of what would best meet the needs of the end users.
Samples of the consumer packages were distributed at the Regional Coordinator Workshop session in Ft. Lauderdale and each regional coordinator had a period of time for comment. The consumer materials consisted of information on advance care planning, dealing with end-of-life care options, and/or undergoing grief and bereavement after the loss of a loved one. They were instructed that these materials could be reproduced and disseminated to members of their respective faith communities. The consumer packet included the following: (See Attachment E)
- The Medical Futility Guidelines of South Florida - A Guide for Patients and Their Families, Health Care Surrogates, or Proxies
- Florida Do Not Resuscitate Order
- What You Should Know About Advance Directives
- Florida Living Will
- Florida Designation of a Health Care Surrogate
- When Someone You Love Dies (brochure)
- How to Talk About End-of-Life Concerns
- Helping a Child Deal with Loss
- Web-based Resources
- End-of-Life Care Resources (by county)
- Glossary of End-of-Life Terms
At the regional education sessions, each clergy participant received three folders containing the consumer materials. In all, 3,000 packages of the consumer materials were reproduced for the regional coordinators to distribute at the sessions. A total of 70,000 pieces of material for distribution to families were duplicated.
The regions were offered the expertise of national experts to present on the various topics included in the curriculum. Dr. Kenneth Doka spoke at four of the sessions in South Florida and one in Pensacola. Dr. Grollman was the keynote speaker at one of the Ft. Myers sessions.
4. Training Curriculum Materials
An important product developed by the Clergy End-of-Life Education Project was the seven-module Trainer's Manual and accompanying Participant's Manual. The formulation of the overall learning objectives and seven training modules that came out of those objectives were developed under the guiding hand of the Advisory Committee with considerable input from Dr. Kenneth Doka, members of the committee, as well as Dr. William Lamers, Medical Consultant to HFA.
The determination was made that the training sessions would be done in a one-day workshop format (approximately six instructional hours) with the option to do half-day session to meet local preferences.
The final mission statement was defined as follows:
The mission of the Clergy End-of-Life Education Project is to increase the knowledge and skills of clergy members to address end-of-life issues by educating them about bereavement and options at the end of life so that they can minister more effectively to the dying and their families.
The overall learning objectives were defined as follows:
- To provide an understanding of the physical and psychological changes brought about by the dying process.
- To enhance clergy members' ability to provide assistance to families facing the dying process.
- To provide an understanding of the advance care planning process and the care options available to persons with terminal illnesses.
- To enhance the understanding of clergy regarding the grieving process.
- To support clergy in fulfilling their role in providing spiritual care at the end of life.
- To increase the clergy's sensitivity to the need for self care.
The seven modules included the following:
- Module 1. Cultural Considerations at the End of Life
- Module 2. The Dying Process
- A. Medical
- B. Psychological Issues
- Module 3 End-of-Life Options
- A. Advance Care Planning
- B. Service Options
- Module 4 The Grief Process
- A. Typical Grief Reactions
- B. Complicated Grief
- C. Anticipatory Grief
- Module 5 Assisting Families
- Module 6 The Role of Spiritual Care
- Module 7 Self Care for Clergy
Irma Emery, consultant, was retained to compile and edit the educational materials submitted, and assemble it into a trainer's manual format that included trainer notes regarding suggested methodologies such as discussion questions, case studies, role plays and similar adult learning techniques. PowerPoint slides were developed for the modules and provided to the regional trainers on a CD. For those who chose to use them, overhead transparencies of each slide were provided. Handout materials, suitable for reproduction, were prepared for all of the modules.
In keeping with the mandate to provide a program with the greatest possible flexibility at the local level, the Trainer's Manual included additional text material for review and use by the regional trainers as they saw fit. The content of the material in each module intentionally included more than could be presented in the time allotted to the subject matter so that the trainers could select those key points they wanted to emphasize.
One important note regarding the curriculum should be made. It was uppermost in the minds of the Advisory Committee members that cultural and ethical considerations play an important role in end-of-life decisions. When we approached the subject, it became clear that we could not address all the many cultures that comprise Florida's population. The determination was made to provide material that addressed cultural sensitivity in a general sense, and not specific cultural practices. The evaluation materials will show that trainers and workshop participants wanted information specific to the ethnic groups with whom they interact. In some sessions this became a very important issue.
