Thomas Lynch & Theodora Peters

1. UNITED in Faith, Health and Strength: A Faith and Community Based Education Program on Advanced Care Planning and End of Life Care. Thomas Lynch & Theodora Peters Nuts and Bolts of Community Based Participatory Research Knowledge Put into Action Breakout Session. April 2014

2. Theodora Peters, MHS Hopkins ElderPlus, Outreach Coordinator New Shiloh Baptist Church, Deacon UNITED – Lead Parishioner Advocate

3. Thomas Lynch, PhD Johns Hopkins Research Coordinator Palliative Care Researcher Roman Catholic Parishioner

4. Introduction Researchers at Johns Hopkins University have applied for funding to develop a faith-centered, community-based educational program on Advanced Care Planning and End of Life Care. If funded, the project will be a joint partnership between parishioners and leaders at two local African-American churches, doctors, nurses, and public health researchers.

5. Who is UNITED?

6. Today’s Aim Gain a better understanding of community member & parishioner knowledge and perception of Advanced Care Planning and End of Life Care

7. Advance Care Planning Discussing medical options in the event that the patient becomes too sick to speak for him or herself “Who do you want to speak for you when you can’t speak for yourself?”

8. End of Life Care High quality end of life care involves symptom management, psychosocial support of patients and their families, and provision of care consistent with their goals. “What do you want the last days of your life to be like?” “Do you want to be at home? Do you want to be in a hospital?”

9. Faith and Illness Religion, faith, and spirituality fundamentally impact how a person perceives life, illness, and death. “When I’m called home, it is a reward…I celebrate crossing over.” “A Homegoing Service is a celebration of life.”

10. The UNITED Project The partnership goals are: To encourage parishioners to talk to each other and their loved ones about advance care planning and end-of-life care that are in alignment with their faith and priorities. To empower parishioners to specify who makes end-of-life care decisions for them, should they be too sick to speak for themselves.

11. First Baptist Church of Highland Park

12. New Shiloh Baptist Church

13. History • New Shiloh Baptist Church is celebrating its 112th year • Church began in 1902 with 3 people in a prayer meeting • Parishioners are predominantly African American

14. Pastors • Dr. Whit W. Allen 1902-1942 • Rev. Timothy Boddie 1964- 1963 • Rev. Harold A. Carter 1964-2013 • Rev. Harold Carter Jr. 1996 to present

15. Rev. Harold Carter, Jr.

16. Growth • The church grew under the first three pastors and continues to grow • National and international leadership • Multi-million dollar complex in the inner city, which includes the evolving New Shiloh Village Community • New Shiloh has licensed over 150 ministers

17. Services & Ministries • Open 7 days a week, 365 days at 6:00am for prayer ministry • Offers 3 different Sunday worship services • Has over 35 ministries to address the needs of the congregation and community

18. Schools • Saturday Church School celebrates 40 years of ministryand replaces the traditional Sunday school classes • New Shiloh is the parent body for 2 schools: • The Nathan Carter School of Music • The Determined Biblical and Theological Institute of Baltimore, MD

19. Nurses Ministry • Registered Nurses, Licensed Practical Nurses, Certified Nursing Assistants & Technicians: • Help people with disabilities or those who become ill during services • Check vital signs or blood glucose • Assist at an annual health fair at the church • Provide CPR training • Comfort bereaved family members at home

20. New Shiloh and UNITED • New Shiloh is a good place for UNITED • This is a good time for UNITED at New Shiloh

21. Proposed components of UNITED A faith-embracing video that, amongst other things, will educate about Advanced Care Planning and End of Life Care Trained parishioner lay health educators who can counsel co-parishioners regarding Advanced Care Planning and End of Life Care.

22. Reason for Breakout Session In the next 12 months, UNITED leaders will engage faith and community groups to explore parishioner and church leader current knowledge and perceptions regarding Advanced Care Planning and End of Life Care.

23. Reason for Breakout Session Your participation today will help the UNITED team develop a plan to identify and reach out to parishioner and community stakeholders. Please also help us identify potential questions and concerns that parishioners and community members may have about Advanced Care Planning, End of Life Care, and the proposed UNITED project.

24. Discussion questions How can we best explore community views on Advanced Care Planning and End of Life Care? Who are other potential partners that could contribute to this project? What concerns may parishioners have about Advanced Care Planning and/or End of Life Care? How should these concerns be addressed?

25. Contact Details Thomas lynch – tlynch13@jhmi.edu Theodora Peters – tpeters2@jhmi.edu

26. Scope of the problem Multiple studies show that African Americans may receive poorer end of life care. African Americans may be more likely to receive care inconsistent with their preferences with further disparities related to transitions of care (such as appropriate use of hospice).

27. Scope of the problem Smith, et al., J Gen Intern Med. (2007) examined satisfaction with health provider communication - African Americans were less satisfied than White populations ; Mack, et al., Arch Intern Med. (2010) examined racial disparities on end-of-life-care communication - African American care provision was found to be inconsistent with their preferences ; Lepore, et al.,Gerontologist(2011) examinedrates of hospice use - there are lower rates of hospice use amongst African Americans as compared to White populations .