Part IV: Overview

IV. PROJECT OVERVIEW

A. BACKGROUND

A 1996 Gallup Poll revealed that 90% of Americans, if faced with a life-threatening illness, would prefer to be cared for and die at home, free of pain, with symptoms under control, and surrounded by their loved ones. Subsequent surveys have not shown any decrease in that percentage. When news of a terminal prognosis is delivered by the attending physician, it is very common for the physician to leave the patient and family on their own to cope with important decisions at the end of life. At these times, many people turn to those who have been a source of comfort, advice and strength to them in the past - their faith community.

Traditionally, clergy members of all faiths and denominations receive little or no formal training in advising, assisting and supporting people through end-of-life crises. Members of the clergy are often called upon to minister to the dying and their families, offering counsel and support at moments of trauma and loss. Even today many theological schools provide minimal or no instruction in grief and bereavement.

There is a lack of information and frequent misunderstandings of options for care at the end of life. These misunderstandings are common among the general public and even among medical professionals. In faith communities, which many people turn to in times of crisis, the clergy have not been given the information needed to provide meaningful direction, care and comfort to their members. The hospice movement is painfully aware of the many individuals with a terminal illness or disease that is no longer responding to curative care who will continue painful, costly and futile treatments because of misinformation. For some there is the perception that their faith would not allow a less aggressive course of action. Beyond the patient, studies indicate that persons suffering from grief reactions are at increased risk for mental and physical illness and, in fact, have higher rates of morbidity. A well informed clergy can mitigate the deleterious physical and mental effects of grief and loss upon the family.

It has been suggested that the ripple effect of a single death reverberates to between three and seven people who are seriously affected by grief reactions. With over 56,000 funerals in Florida each year, hundreds of thousands of survivors would benefit from informed spiritual leaders able to use the proper words, avoid the wrong ones, and reach out with increased compassion and sensitivity to the special needs of the terminally ill and the bereaved. 

With the overwhelming daily demands placed upon them, most clergy members have neither the time nor the energy to pursue extensive continuing education. Clergy need a convenient way to learn more about end-of-life options, grief and bereavement. 

B. PROBLEM STATEMENT

Thanks in large measure to the foresight of its Legislature, Florida is at the forefront in its initiatives to promote good end-of-life care, particularly with the passage of laws that facilitate advance care planning. According to a recent report, Means to a Better End. A Report on Dying in American Today, published by Last Acts, (a national campaign to promote improvements in end-of-life care), Americans have no better than a fair chance of finding good care when facing a life-threatening illness. The report rated all 50 states and the District of Columbia on eight criteria as a basis for assessing the state of end-of-life care in this country. Comprehensive information on the project, reports and research findings are available on an interactive Special Report on The Robert Wood Johnson Foundation web site, located at http://www.rwjf.org/special/betterend. 

Florida can be proud of its rating in the Means to a Better End report, particularly in the area of state advance directive policies. The ratings were from A through E with A being the highest and E the lowest. In response to the question: Do state policies support good advance care planning? Florida was rated "A" based on the quality of state advance directive laws passed in 2002. The state also was rated "A" in response to the question: Do state pain policies encourage good pain control? 

There is, however, still work to be done to translate enlightened state policies into practice at the grassroots level. Florida's ratings regarding hospice use was "C" based on percentage of deaths with hospice stay in 2000 and "D" based on median length of stay in hospice. Experts agree that patients need at least 60 days of hospice care to realize its benefits, but stays range from 14 to 43 days.

Ninety (90%) percent of Americans say they would prefer to die at home, while nationally only 25 percent of deaths occur at home. About half of all deaths occur in hospitals but less than 60 percent of hospitals offer specialized end-of-life services. The Means to a Better End report rated Florida "D" in answer to the question: What proportion of state deaths occur at home? This would suggest that if Floridians mirror the national picture, many who wish to die at home are not seeing their wishes respected. In fact, the State was rated "E" the lowest rating based on the number of elders who spend a week or more in the ICU during the last six months of life. (Based on percentage of Americans over 65 with seven or more ICU days totaled across all admissions during the last six months of life.)

The State did not rate well when the application of its pain policies were viewed from the level of patient services. Few hospitals in the State of Florida report having hospice programs or palliative care programs. The hospitals were rated "C" on self-reported pain management programs. The report also suggests that there is work to be done at the nursing home level in terms of pain management. In response to the question: How well do the state's nursing homes manage their residents' pain? Florida was rated "C." 

As indicated in the study completed by Florida's Panel for the Study of End-of-Life Care, greater efforts are needed to help Florida's residents receive more compassionate, dignified care as they near the end of their lives. One of the principal recommendations in the study is to "encourage the ongoing development of innovative end-of-life educational programs and standardized training" for health care providers. 

The Clergy End of Life Education Project addresses the development of a model that translates progressive policy into local practices by engaging faith communities in the process of promoting good end-of-life care. Because clergy historically have been influential in minority communities, we believe such education will positively affect populations that have been historically disenfranchised from this humane system of care for terminally ill people.

With the implementation of the Clergy End-of-Life Education Project Florida will move ahead of other states in its proactive efforts to improve care for the dying by educating a critical gatekeeper into the medical system and a strategic member of the family support system.

C. PURPOSE STATEMENT

The Clergy End-of-Life Education Project is a state-funded initiative that has as its goal increasing the knowledge and skills of clergy members to address end-of-life issues by educating them about bereavement and options for care at the end of life, so that they can minister more effectively to the dying and their families. 

The Clergy End-of-Life Education Project is a statewide educational project implemented in 13 counties throughout the State of Florida. The project developed an extensive curriculum addressing key issues in end-of-life care, a toolkit of consumer information and state-wide series of educational workshops for clergy members. The project subcontracted with six local health councils serving the 13 counties under the leadership of the Health Council of South Florida to conduct outreach to local faith communities and to implement the educational programs. The project utilized a self-reported participant profile and a pre and post test survey of workshop participants to assess the impact of the educational offerings. Through input from local participants in each county, the local health councils were given latitude to determine the learning needs of the clergy in their communities and to tailor their workshop accordingly.

D. OVERSIGHT

Project oversight was provided by the Clergy End-of-Life Education Project Advisory Committee. The committee was comprised of 15 members representing hospice organizations, university ethics and gerontology programs, clergy members, and medical care providers. The Medical Advisor to the project was William Lamers, MD who serves as a Medical Consultant to Hospice Foundation of America. The Educational Consultant to the project was Kenneth Doka, Ph.D., M.Div., Graduate Professor of Gerontology at the College of New Rochelle, and a recognized leader in clergy end-of-life education.

The Advisory Committee conducted two formal meetings to review the work plan and products produced by the project management team. In addition, work in progress was reviewed by the committee via e-mail. The committee provided valuable guidance on the project's direction, selection of counties to participate, input into the development of the curriculum and review of the final report. 

Its functions were three-fold:

1. To represent the communities involved and advise on the cultural appropriateness of all documents.
2. To provide guidance regarding the development of the curriculum and the professional and consumer materials.
3. To assist, as needed, with the pre and post test evaluation tools and make recommendations regarding the final report.

The Clergy End-of-Life Education Project Advisory Committee was comprised of the following members:

The Department of Elder Affairs provided oversight services by reviewing drafts and approving outreach materials for state compliance, and offering valuable advice on curriculum and family materials development. The Department shared its experience in the development of its own end-of-life materials and in directing us to other state agencies with publications and information important to the project.

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